instructions
stringlengths 3
248
| input
stringlengths 11
9.73k
⌀ | output
stringlengths 24
1.2M
|
|---|---|---|
I need to vent/support
|
I need to vent, need support. I'm so frustrated with my husband and my stepdaughter's mother. My stepdaughter is 9 years old and has autism. She's able to communicate somewhat , excellent at reading and understanding questions/ directions. She also loves phones and iPads, she's a whiz on them. That's all they give her is electronics from morning to night and then meds to sleep. There's nothing being done to help her to cope with her feelings so she doesn't have as many meltdowns, no steps with potty training. Even though she literally verbalizes her need to be changed, has even thrown her diaper off. She's often absent from school because her mother says she's having a bad day. She's now truant because of it. I look at this bright, beautiful girl and it breaks my heart because i imagine how frustrating this has to be for her. Am I expecting too much? Are their therapies that can help my step daughter? It seems like more could be done to support her and I'm going to try my best to be supportive. I just feel like since it's between my husband and his ex that my hands are tied and it's so frustrating to watch. She's biting more often as , she's literally left teeth marks , will also headbutt. Response to this is more meds. Even though I'm not her mother I watch her and im extremely calm & patient. Just don't what more I should be doing.
​
I understand that devices help but she's allowed to have one until she tires of it. Once it was 1 in the morning and she was wide awake fighting sleep with her phone.
|
You're not expecting too much. It sounds to me like you're the only actual parent here to be honest. No kid should be plugged in all day like that autism or no. Have you sat down with dad and discussed this with him?, I've definitely tried and have been told that they are doing fine with her &he has snapped at my suggestions. I'm not privy to the discussions with her primary doctor at all. I'm a parent to a now 18 yr old with adhd and I'm really patient and understanding due to that. I'm going to continue to advocate until he listens. Something is wrong here., Something is definitely wrong. Have you asked her how she feels? I know it can be hard for autistic kids to articulate feelings but she's 9. There is no way she hasn't noticed she's the only kid at school her age in diapers. They might not say it but they notice that they're different. It's our job as their parents to help them learn to fit in as best they can. Her parents are failing her in that regard big time. My husband and I also have issues getting our boys mom to treat him his age. It's hard for some people to understand that just because they have autism doesn't mean they're a lost cause., We make sure to normalize diapers and explain how some children and adults need them in my special education class. It's fairly common for disabled children to need them for longer, but I would definitely talk to the parents and ask about pull up at least in this situation.
Even if she's not able to potty train yet (noticing dirty diapers is good, but she may not feel she has to go before then), it sounds like she's ready to learn how to change her own diaper at minimum. Giving children more control and independence, especially around things like hygiene, is always a good thing., If she is in a special day class she may well not be the only one in diapers - still, it is something to work on if she is physically and cognitively able to.
Overall though I agree that people give up way too easily on kids with autism., True. I live rural. I forget that people have access to things I don't., And that's what I'm concerned with, the giving up, You're not expecting too much. It sounds to me like you're the only actual parent here to be honest. No kid should be plugged in all day like that autism or no. Have you sat down with dad and discussed this with him?, I've definitely tried and have been told that they are doing fine with her &he has snapped at my suggestions. I'm not privy to the discussions with her primary doctor at all. I'm a parent to a now 18 yr old with adhd and I'm really patient and understanding due to that. I'm going to continue to advocate until he listens. Something is wrong here., Something is definitely wrong. Have you asked her how she feels? I know it can be hard for autistic kids to articulate feelings but she's 9. There is no way she hasn't noticed she's the only kid at school her age in diapers. They might not say it but they notice that they're different. It's our job as their parents to help them learn to fit in as best they can. Her parents are failing her in that regard big time. My husband and I also have issues getting our boys mom to treat him his age. It's hard for some people to understand that just because they have autism doesn't mean they're a lost cause., We make sure to normalize diapers and explain how some children and adults need them in my special education class. It's fairly common for disabled children to need them for longer, but I would definitely talk to the parents and ask about pull up at least in this situation.
Even if she's not able to potty train yet (noticing dirty diapers is good, but she may not feel she has to go before then), it sounds like she's ready to learn how to change her own diaper at minimum. Giving children more control and independence, especially around things like hygiene, is always a good thing., If she is in a special day class she may well not be the only one in diapers - still, it is something to work on if she is physically and cognitively able to.
Overall though I agree that people give up way too easily on kids with autism., True. I live rural. I forget that people have access to things I don't., And that's what I'm concerned with, the giving up, You're not expecting too much. It sounds to me like you're the only actual parent here to be honest. No kid should be plugged in all day like that autism or no. Have you sat down with dad and discussed this with him?, I've definitely tried and have been told that they are doing fine with her &he has snapped at my suggestions. I'm not privy to the discussions with her primary doctor at all. I'm a parent to a now 18 yr old with adhd and I'm really patient and understanding due to that. I'm going to continue to advocate until he listens. Something is wrong here., Something is definitely wrong. Have you asked her how she feels? I know it can be hard for autistic kids to articulate feelings but she's 9. There is no way she hasn't noticed she's the only kid at school her age in diapers. They might not say it but they notice that they're different. It's our job as their parents to help them learn to fit in as best they can. Her parents are failing her in that regard big time. My husband and I also have issues getting our boys mom to treat him his age. It's hard for some people to understand that just because they have autism doesn't mean they're a lost cause., We make sure to normalize diapers and explain how some children and adults need them in my special education class. It's fairly common for disabled children to need them for longer, but I would definitely talk to the parents and ask about pull up at least in this situation.
Even if she's not able to potty train yet (noticing dirty diapers is good, but she may not feel she has to go before then), it sounds like she's ready to learn how to change her own diaper at minimum. Giving children more control and independence, especially around things like hygiene, is always a good thing., If she is in a special day class she may well not be the only one in diapers - still, it is something to work on if she is physically and cognitively able to.
Overall though I agree that people give up way too easily on kids with autism., True. I live rural. I forget that people have access to things I don't., And that's what I'm concerned with, the giving up, You're not expecting too much. It sounds to me like you're the only actual parent here to be honest. No kid should be plugged in all day like that autism or no. Have you sat down with dad and discussed this with him?, I've definitely tried and have been told that they are doing fine with her &he has snapped at my suggestions. I'm not privy to the discussions with her primary doctor at all. I'm a parent to a now 18 yr old with adhd and I'm really patient and understanding due to that. I'm going to continue to advocate until he listens. Something is wrong here., Something is definitely wrong. Have you asked her how she feels? I know it can be hard for autistic kids to articulate feelings but she's 9. There is no way she hasn't noticed she's the only kid at school her age in diapers. They might not say it but they notice that they're different. It's our job as their parents to help them learn to fit in as best they can. Her parents are failing her in that regard big time. My husband and I also have issues getting our boys mom to treat him his age. It's hard for some people to understand that just because they have autism doesn't mean they're a lost cause., We make sure to normalize diapers and explain how some children and adults need them in my special education class. It's fairly common for disabled children to need them for longer, but I would definitely talk to the parents and ask about pull up at least in this situation.
Even if she's not able to potty train yet (noticing dirty diapers is good, but she may not feel she has to go before then), it sounds like she's ready to learn how to change her own diaper at minimum. Giving children more control and independence, especially around things like hygiene, is always a good thing., If she is in a special day class she may well not be the only one in diapers - still, it is something to work on if she is physically and cognitively able to.
Overall though I agree that people give up way too easily on kids with autism., True. I live rural. I forget that people have access to things I don't., And that's what I'm concerned with, the giving up
|
I sense that my (12 month old) son has autism.
|
Hello All
Before I continue my rant, I just want to state that I have 2 kids (an Autistic 3 year old girl and my 1 year old son). I don't want to make assumptions too soon (especially since I am not an expert), but I am suspecting that my son might be on the spectrum.
A couple things I have noticed:
My son is starting to tense up and flap his hands excessively with excitement. He is still not yet walking and is currently improving crawling with physical therapy. He is having moments of sleep regression and tends to wake up a couple times per night (unknown why). He does make eye contact, but does not respond to his name (or nickname).
I can be wrong since I know it is too early to know. But all of this has thrown me into a depression. Having my daughter diagnosed is still hard enough to process, and I am having anxiety with my son. I don't know how to process this. I don't know what future my children hold, or if they even have an independent future at all. I don't know what to expect, and I have so much fear for the future.
I love my kids and this doesn't change my love for them, but I feel guilty of doing something wrong. I can admit when I am wrong (and if I am wrong in this case, I understand), I just worry too much for them.
|
Eh, TBH listen to your gut on this one. You know wait lists are long. Get him on one for a proper assessment. In the months it takes for him to have all the tests he'll probably be of age and if not you can reassess later. I know the common wisdom is to wait but for me I knew that my son had autism before anyone would believe me. I also believe that my infant daughter is likely NT though my son went through a regression so I'm waiting until she's at least two before I'm going to breathe fully about her.
But for yourself: you see the signs, plan accordingly., My son was diagnosed at 21 months, I was devastated. A good doctor can recognize the signs very early. Get your son to a specialist that can see the signs and diagnose him so you can get him treatment as early as possible. My son is currently 35 months and still non-verbal we continue to pray it’s in there somewhere. Although he isn’t like my other children, he is a complete joy, even during the meltdowns. There isn’t another human on the plant I love more than him. Most days I feel bad that I’m trying to get him treatment that isn’t in his best interest, but when I get home from work and he finds his way to spending time with me I know I’m forgiven., Do you have any updates on this? I hope everything turned out well., I suspected my son had "something" when he was 6 months old, and he NEVER mimicked us, like ever. Videos would say "stick your tongue out, and your baby will copy you!" and show a video of this happening with a mom and baby. And that was NEVER my son. I tried to teach him gestures, and he never picked up on them, never learned to wave bye-bye or even point. By the time he was 1 year old, I just knew it was something and very much suspected autism, but everyone brushed me off.
We pushed our doctor at his 15 month check up to put us on the waitlist for assessment. Thankfully, he is a great doctor and did so, and we got diagnosed at 19 months old.
I'm a big advocate for "trust your gut" because you are the parent and can see a lot of things in your child that a doctor can't in their 30 minute appointment window. There are too many stories of parents having to fight for years to get a diagnosis. And the earlier you can get it, the better. My advice is to continue making notes - write it down or record it on video, even - and take it to the doctor at each check-up and share it with them so at least it's on their file that you are concerned. They may want to wait to refer for assessment til he's a little older, but they may also be more willing since you already have a daughter with ASD which does mean you are statistically more likely to have another child with ASD., One year is too young for a diagnosis. When you talk to your son, does he look at you and smile?, Any updates?, Hello, would you mind sharing how your son is doing?, I have a daughter who is also autistic, so it has been taking a toll on me. I might have to seek therapy due to all this stress and fear. I love my little guy so much, it just tears me., I felt this comment:( . What were your son’s symptoms when he was diagnosed? Has he improved?, He eventually does look at me and smile, he does make eye contact. He doesn't always respond to his name but if I call his name multiple tines he would look.
That's why I don't want to assume. But I have also noticed that he doesn't wave or imitate much., I had to cry when I was typing what I said. These challenges are simply opportunities to see who we truly are., Well he didn’t talk at all, he loved to spin anything on the floor and watch it, he could even do it with both hands. Honestly I was impressed with his ability to spin things. Truthfully, and I feel dumb when I think about it, my wife and I had zero idea there was even a problem. His 15 month wellness check the doctor sent us to have our son evaluated and the folks who did the evaluation were like, well maybe, but we aren’t sure. At his 18 month check a different doctor from the same group said he wanted our son checked, when I said he had already been checked, he said have them do it again. I was shocked, but followed the advice. The evaluation gave us the option to receive speech therapy and got our son the opportunity to see the specialist. One visit with that doctor and our son was diagnosed with autism at 21 months. I was wrecked for about three weeks, until I realized I love him either way. My son really had more symptoms than the spinning, very little eye contact, and he didn’t point or follow our fingers when we pointed, although he did sometimes. I see things much clearer now, but at the time I truly had no clue.
He has improved some from 21-35 months, in that time he has had weekly speech therapy and three months ago we started ABA therapy. He still isn’t communicating verbally, but we have seen improvements with him beginning to sign for some things when he feels like it. The spinning things has slowly subsided, but it’s not gone. He still doesn’t like to look at people in the eyes, but sometimes it does happen. He has recently started coloring and that’s his top enjoyment right now. At between 18 to 21 months we saw almost no meltdowns, but now they happen, mostly when he becomes frustrated. I just do my best to be understanding and try to protect him. He isn’t like other autistic children in some respects, my son doesn’t mind being touched and he loves to be tickled, to the point when I stop he grabs my had and pulls it back to him so I can do it again.
|
I think my nephew is autistic but …
|
As the title states I think my nephew has autism but I’m looking for some advice so I can finally force his parents to get him the help he needs I feel so sorry for him.
I’d first noticed signs when he was 2-3 and mentioned it to his parents but they totally brushed it off. Yet now he’s coming up to 6 years old and is struggling at school, socialising etc.
They’re sort of looking into getting him check out for Autism but only if the school does it for them.
The little guy likes to ask questions especially some very odd questions you’d think a child wouldn’t ask at that age. He often comes to me with these odd questions because I guess I give the answers and explain things in a fun way.
But if anyone else try’s to answer him, he’ll lose concentration very quickly.
His concentration also is very short when playing also, if he doesn’t have anything with batteries in it he loses interest and can’t use his imagination.
Yet he does like to build little things out of blocks or Lego (though I think they’re his booby traps) that require some thought into them. But again after a while he’ll just straight up destroy what he built and go manic/hyper trying to be naughty for no reason at all.
When he gets excited he’ll hop up and down on the spot and flaps his arms, I told him yesterday “Hey buddy we’re doing the flappies again.” Whilst trying to fix his latest invention out of blocks which he asked for help with and he stopped but replied “Aww but I like doing the Flappies”.
Other excitement releasing methods he uses is being naughty he’ll try and provoke people into chasing him or another reaction. But in the end he’ll just get told off and told to sit on the naughty step. Yet he seems confused why he’s being told off, but after a bit totally forget anyway once he’s been released from timeout.
Are these signs of autism or something else?
Any advice would be greatly appreciated in what to do or even help the little guy with concentrating on his work as he’s struggling with writing as well.
|
>When he gets excited he’ll hop up and down on the spot and flaps his arms, I told him yesterday “Hey buddy we’re doing the flappies again.” Whilst trying to fix his latest invention out of blocks which he asked for help with and he stopped but replied “Aww but I like doing the Flappies”.
Don't discourage this. This is called "stimming" (short for self stimulatory behavior). It is important that autistic people be allowed to stim, unless the stims are harmful to themselves or others., Please don’t shame him about his flappers. If he is autistic, being made to hold back stims that aren’t hurtful is harmful., Why feel sorry for him? What you should do? Love him. Be there for him. Accept him. The school will absolutely test him. His parents don't need to go to private doctors to get a diagnosis. And if he is autistic, this help he gets doesn't mean he will stop doing things you rudely point out to him like "flappies." The school should be helping him with accommodation even without a diagnosis and maybe his teacher already is. I'm a classroom teacher and if kids are hyper or distracted I move their seat without needing a piece of paper to tell me how to best support my students. It sounds as though you think a diagnosis will change things? He is who he is., Let him do his flappies., It does sound like he has a lot of indicators of both autism and ADHD. To be honest, you sound a bit shame-y in your approach. Don’t discourage flapping- it’s stimming and it’s important for him to be able to do this. He’s likely not being ‘naughty’, he’s likely trying to regulate himself. A diagnosis may be helpful to get everyone to understand and support him better but at the end of the day, it is the parents decision., I would just support the parents with their choices. The school will help provide support if he’s already on their radar. As an aunt you can ask how he’s doing in school and support the parents emotionally. Love your nephew and be the best aunt you can. You are not the parent and shouldn’t interfere unless it’s CPS worthy imo. If parents are already “sort of looking into it” and he goes to school regularly then that is enough., He may have ADHD as well. A lot of people with autism will also have ADHD. My son flapped his hands when he got excited as well. He also loved building things with legos and doing puzzles. I had him evaluated at the school in kindergarten and they told me it wasn’t autism but his adhd (which was already known at the time of testing). I had told them my concerns and so did his speech language therapist and I even had a letter from his pediatrician. Well I didn’t know it then but they never even tested him for autism. They didn’t administer the proper testing used to formally diagnose or rule it out.
I would make sure that if he gets testing through the school he is given testing used to diagnose autism., I don't think you knew better about the stimming, but now you do ... definitely let him do that. Verbalize *to him* that it's okay to do that. He needs to know.
Unfortunately, you can't make the parents do anything. The school will do what it can, but even in regards to how seriously his parents take it if there is a diagnosis ... you can't make anything happen.
What you *can* do is learn how to best support someone with autism yourself. You can try to help the parents learn as much as you can, but if they're completely against the idea then there's not much to be done.... But you can turn yourself into a safe person for him, regardless of what they do or do not do., Does anyone in your family have autism/ADHD? I'm wondering if it might be both., “I see (nephew) has a lot of difficulties, you could get him evaluated. What’s the worst that could happen?”, Mind your business., Autism can come with other things like ADHD and sensory issues. I hope that his parents do seek help asap as it has a huge impact if the right support isn't put in place for him during his school years. The earlier the better to get a diagnosis. My son has similar behaviours, he is diagnosed with autism, ADHD and sensory processing and has communication difficulties. The process of getting a diagnosis is lengthy aswell. It's difficult at first to understand what upsets him and why but as time goes by you gradually work it out. My son's symptoms were highlighted more when he started nursery, but I noticed when I'd take him out he would gallop alot and walk up and down walls and bushes for ages and if I took him away he'd become really upset. My son is now in specialist school as mainstream was just too much and he couldn't handle the environment and didnt have the right support due to funding etc. He has come on alot now and doesn't stop talking but I'm so glad he has the right support in a more suitable setting..your nephew is lucky to have you looking out for him. My brother is not so involved in my son's life much. Good luck, What if the kid doesn't have autism? What if you're just projecting your rather obvious OCD onto him? What if he develops a complex about being misdiagnosed by someone whose vast medical knowledge comes from reading WebMD? It's not your place to be forcing anything on anyone. It's not your responsibility. You can always walk away and say, "No harm, no foul." Can the rest of us? you should tread carefully with your assumptions because this is real life for some of us., I don’t want to discourage him and I’m the nicer one about his (flappies) stimming. It’s everyone else that will tell him off if he does it. As I was only stopped him before everyone else in the room told him to quit jumping like they do., Don’t want to shame him but I don’t want him to get told off by the grandparents or parents for the flappies either., I feel sorry for him because he doesn’t get the help he needs. He gets told off for stuff he doesn’t mean and I want to make sure he doesn’t get mentally hurt growing up. Depression, anxiety, etc are horrible monsters to deal with.
If he’s constantly be told no, to everything or you’re not trying etc it’s going to really mess with him and I don’t want that for him.
I want the diagnosis so that the rest of the family will start to accept that this is who he is and their methods will not help him grow. You have to adapt to his needs not force him into a mold you decide for him and if he doesn’t comply give up., Are you a teacher in America?, Yep definitely going to let him do his flappies despite what his parents and grandparents say., I assumed his flappies where some kind of stimming after finding out what that meant. I had originally thought it was him venting his excitement because it just got a little to much for him to handle internally.
I really didn’t want to discourage him because I don’t mind at all but I also didn’t want him getting told off by the grandparents and parents in the room at the time. So I secretly tried to get him to stop before getting told off. Though this was the first time I stopped him and that’s the response I got I don’t want to stop him again.
I honestly don’t think he’s being naughty either and he only acts this way in front of his parents. He’s good as gold with me and plays, asks interesting questions, wants me to help with things etc. But as soon as his parents arrive it’s like a switch flips and he starts to not listen, starts to do things that will get him in trouble like throwing toys etc.
Would this be because he’s just had an overload of emotions and is venting?, I do ask him how he is doing and whether he needs me to help with anything. But he either says he can’t remember or avoids it all together and that he just want to play with me.
We have done homework together before and he enjoyed it a lot but it was just before his bedtime as his parents only mentioned he had some homework to do. But because I was going at his pace they eventually rushed him of to bed which annoyed him because he was having fun., This is what I’m hoping for is that he’ll get properly tested at the school else I don’t think his parents will do anything about it otherwise. Seeing as it’s already been 3 years and now they’re doing something about it., After his reaction to the flappies I felt guilty for sure so definitively not doing it again even if the family wants me too.
I’ve been looking into ADHD/Autism for my own benefit and that’s how I clocked onto his personal quirks straight away.
I’m totally fine with being Auntie safe space for him anyway. 👍🏻💖, Well I’m currently getting tested for ADHD and Autism due to life struggles and I’m seeing a lot of how I struggled in him. So I want to make his life easier and get him the help he needs., Well I think he’s going through the school right now. But as his Aunt could I take him to get evaluated if the school doesn’t follow through with it?
I’m not sure how accommodating schools are nowadays. As you use to just be classed as a trouble maker if you acted a little out of line., Would a sensory issue be classed as freaking out over a fizzy drink to the point of crying and being distressed?
Because when he was a little younger he was asking what Auntie was drinking. He was at the stage were he knew Auntie had the good treats so he’d ask for whatever I was munching or drinking. So I said a fizzy drink, a sweet pop of some kind I can’t remember which type but I knew cola is out of the question if he ever wanted it. As his parents have strict rules for sweets etc.
So it was something he could try for sure, yet as soon as the drink was in his mouth he spat it all over the floor suddenly crying and panicking. I tried to ask him what’s wrong and he just said the bubbles, itches, inside mouth, don’t like it through tears. Obviously his mum came in at that point and asked what had happened. I explained and she just was like I guess he didn’t like it best not to give it to him.
Yet I have never seen a child react that way to food or drink before so I asked her about it and she just said kids do that. Like sure kids spit out stuff they don’t like but they aren’t distressed or burst into tears when they do.
Even to this day he won’t touch anything carbonated at all despite seeing me drink it.
My nephew definitely gallops a lot when he’s enjoying himself outside. I haven’t seen the walls or bushes part maybe I have but like the galloping I just thought it was normal childlike behaviour as I did it growing up too.
I don’t think he’s getting the right support in class either because he goes that the assistant teacher just tells me to skip it if I don’t understand. I asked do they not make it easier for you to understand? No he says they just tell me to skip it.
Also phonics is incredible hard for him to understand and I can’t blame him. It’s a very odd way of teaching children.
I wonder if they are some special schools like that around his parents place to look into? It would be nice if he could be taught at his own speed and with extra more understanding help., You be his safe place then., One way you could help is to do flappies with him. Not in a mocking manner, but just join in., But you are also telling him no. I know you think you are doing it in a nicer way, but obviously based on his response he still hears that you want him to stop his swimming behavior.
You are unfortunately not going to be able to force his parents to do anything, so your best course of action is actually being a safe person for him. That means he gets to be exactly who he is around you, and you don't echo the sentiments of your family in a 'nicer' way., [deleted], I meant ask the parents 😂 He’s only five turning six. Even typically developing kids only have a small comprehension of school at that age. In some countries he wouldn’t even be doing formal school work yet. He will learn and grow. One fun way to work on concentration, social skills, and school skills at that age is playing games together. Uno, hoot owl hoot, candy land, cherry o. That might be a fun way an aunt could help with development., Awesome! You got this 🥰, Yes , some things like textures of certain foods, consistency of drinks etc , and sensations, could most definitely cause him to react. Sometimes also an unpleasant experience and the not knowing what to expect, autistic children like predictability, routine and doing things in certain ways. Some unpleasant experiences may put him off for a long time. You can gradually try over time but it's very small steps at a time, not to overwhelm them too much. Sometimes it work, and sometimes not just go with what he communicates with you. It's hard to gauge what things upset him but overtime you will get it. It took me a while to figure stuff out.
Do his school recognise any signs of autism ? So he does have one to one support? Yes it would be good to look and consider other schools that cater for autism if his current school are not meeting his needs. Some children manage ok in mainstream, it just depends what level of the spectrum since every child is different. To be honest these phonic lessons they have now is ridiculous. I've had to help my youngest at home with it and I'm thinking it's so much more confusing to how we learnt back in the old days. None of that nonsense., Right so just be a chill awesome Aunt who he can rely on?, Wait he’s already masking at such a young age? That must be so taxing on the little guy. 😱, Lol true kids only remember the playing side of school at that age, we all did. 🤭 I’m not sure if his parents are really keeping up to date on his development we only here of his struggles. But when I ask whether they’ve got the tools to help him they say oh yeah that’s a good idea, yet never follow through with it.
I’ve made sure he has phonics cards, a muscle memory writing board and various other things to help him just so he’ll have it easier.
I know of uno but what are these other games you mentioned? I’m going to Google them, hoot owl hoot sounds like a fun game from just the name. 👍🏻💖, Any tips and tricks? I think I can handle it but any advice would be greatly appreciated., He doesn’t seem to be a picky eater or anything like that, though he does play with his food a lot. But I think that comes down to him having a lot to say and he doesn’t do to well with multi-tasking so when he has food on his fork, he’ll want to say something in the process of moving the fork, then bye goes the contents of that fork in what ever direction gravity decides. 🤣
Maybe later down the line he might like fizzy drinks maybe not. If he wants to try again I don’t mind giving him some. Just got to have a towel or something on hand to catch the drink if he still hates the feeling of it.
From what I’ve been told is that he barely past this year even with the helper/assistant and apparently he has extra home work over the summer break. If he brings it to me I’ll help him out if he wants. That’s if grandma doesn’t get to him first. 😅
I sadly don’t understand phonics myself either I even got some flash cards to help him with it. But to be honest I just wish it was back to how it was before because I don’t even believe we use such a system in the adult world anyway so why are we complicating it for the little ones?, Exactly.
You are the one to let him know that he is doing great, that stunning is fine, and to not let the rest of the family get to him.
|
I think my son is scared to poop :/
|
(Sorry this is kind of long)
Background:
Potty training was a struggle with my 5 year old nonverbal son. He learned HOW to pee in just a couple of weeks. But he never told us that he needed to go so we would take him every 30 mins and he would push something out. But constant accidents in between. A long year later, he has learned to hold it until we take him. He still won't tell us, but he'll hold it until we take him. (I will say that the progress skyrocketed as soon as we took diapers away completely and put him in undies. Everyone said it but I didn't think it was true) This has gone from every 30 mins to like every couple hours. If we get busy and forget to take him however, he will pee in his pants. But we never forget, maybe like twice since he's been potty trained and he's been really upset both times. It's an amazing feeling not seeing pee accidents anymore!!
The issue:
HOWEVER, now he has gone from being a daily pooper, to not going for like a week. And when he does, it's usually in his undies and that upsets him soooo much, he cries so painfully and it's heartbreaking :'(
If I catch him "in the position" I will swoop him up and put him on the toilet and that's worked a few times and he has gone in the toilet. But more often than not, he will go in his pants. That's after holding it for like a week. He doesn't have any constipation problems either.
Reminder again that when he was in diapers, he would poop daily. As soon as the diapers went away, he stopped pooping.
For those wondering, we have NEVER scolded him for peeing or pooping in his pants. We very calmly say "it's ok my love, mommy will clean. But remember, we go pee/poop in the toilet, not in your pants" like a broken record.
Anyone else experience this? What has worked for you?
|
Yes we had pooping anxiety as I called it, my son would intentionally hold his poop in. We had to do Miralax everyday, and we tried to keep him home during this time- as it is his preferred toileting space. I put a visual pooping step by step in the bathroom along with books and fidgets-This helped him become more confident pooping again.
Edit to add: OP if you want you can PM me your email and I will send the pooping visual I made on Canva, Omg you're so sweet to offer!! I will PM you now. He has spring break next week so I will start the laxatives then since he'll be home. I tried a suppository once and that worked really well, although I feel like it traumatized him and made ME cry lol. He's super picky with his eating so anything oral will be a huge challenge :/ sigh... anyway, I will try your method, praying it helps!! <3, Yes we had pooping anxiety as I called it, my son would intentionally hold his poop in. We had to do Miralax everyday, and we tried to keep him home during this time- as it is his preferred toileting space. I put a visual pooping step by step in the bathroom along with books and fidgets-This helped him become more confident pooping again.
Edit to add: OP if you want you can PM me your email and I will send the pooping visual I made on Canva, Omg you're so sweet to offer!! I will PM you now. He has spring break next week so I will start the laxatives then since he'll be home. I tried a suppository once and that worked really well, although I feel like it traumatized him and made ME cry lol. He's super picky with his eating so anything oral will be a huge challenge :/ sigh... anyway, I will try your method, praying it helps!! <3, Yes we had pooping anxiety as I called it, my son would intentionally hold his poop in. We had to do Miralax everyday, and we tried to keep him home during this time- as it is his preferred toileting space. I put a visual pooping step by step in the bathroom along with books and fidgets-This helped him become more confident pooping again.
Edit to add: OP if you want you can PM me your email and I will send the pooping visual I made on Canva, Omg you're so sweet to offer!! I will PM you now. He has spring break next week so I will start the laxatives then since he'll be home. I tried a suppository once and that worked really well, although I feel like it traumatized him and made ME cry lol. He's super picky with his eating so anything oral will be a huge challenge :/ sigh... anyway, I will try your method, praying it helps!! <3, Yes we had pooping anxiety as I called it, my son would intentionally hold his poop in. We had to do Miralax everyday, and we tried to keep him home during this time- as it is his preferred toileting space. I put a visual pooping step by step in the bathroom along with books and fidgets-This helped him become more confident pooping again.
Edit to add: OP if you want you can PM me your email and I will send the pooping visual I made on Canva, Omg you're so sweet to offer!! I will PM you now. He has spring break next week so I will start the laxatives then since he'll be home. I tried a suppository once and that worked really well, although I feel like it traumatized him and made ME cry lol. He's super picky with his eating so anything oral will be a huge challenge :/ sigh... anyway, I will try your method, praying it helps!! <3
|
I want my 6 year old to start school but...
|
My 6.5 year old was diagnosed a couple years ago with ASD and they highly suspect that he also has ADD/ADHD. He is very smart (picked up reading on his own and has been able to do basic multiplication and double digit addition in his head since he was 4) and he is very communicative (he mostly struggles with remembering to "use (his) words", mixing speach with gibberish/vocalizations, and forming his words into understandable sentences). However, there are two things he does struggle with: potty training and aggression.
The main issue with potty training isn't that he doesn't know how to do it or even that he won't do it. The issue is that he won't let anyone know when he has to go and will say he doesn't when asked even if he does. There has been times when he has let us know but they are rare and vary rarely happen more than a couple times in a row. We've tried multiple strategies to get him out of diapers but none of them have worked.
With his aggression, it isn't just when he gets upset/angry. I mean he does hit, scream, claw, bite, and all of that when he gets angry. However he will also do that stuff when he's excited, bored, or even randomly in the middle of playing. It use to only really happen at home and with the immediate family (me, my wife, my mother, my youngest son, and my daughter) but he's started doing it during his ABA sessions and not too long ago he randomly decided to slap a little girl about his age at a play area because she was crying and he wanted her to stop. He also has a habit of intentionally trying to break things/rip things apart and even with things like Legos, he'd rather break his builds apart by throwing them on the floor and shattering them instead of just pulling them apart.
Both of these things have me hesitant to enroll him in public school (hence the reason he isn't in kindergarten) and we can't afford to send him to any kind of school or educational program that has out of pocket costs. I guess my question is if there's anyone that has gone through something similar and how did you handle it? I know home schooling is an option (and one I'm both willing to and capable of doing) but I'm just not sure if that's the right option. I mean I don't want him to fall behind because of me. Any advice would be appreciated.
|
My son was 6 when he finally said to us “can I use the potty”. We were overjoyed bc we knew it would mean not having to change mini-elephant sized 6yr old shit diapers. Before that, it was a struggle trying to potty train him. A LOT of meltdowns. But I think because we kept trying, he eventually gave in and decided for himself that he wanted to use the potty. My advice would be to sit him down on the potty (assuming he’ll let you) and have him preoccupied with an iPad or device so he’ll be comfortable.
As for the aggression..unfortunately can’t help you there., For great info and tips on behavior and potty training, check out Molly Johnson (@ theautismconsultant on IG)!
I can imagine how challenging it must be to navigate these waters with your little one. It sounds like you're doing an amazing job advocating for him and seeking out the best solutions., Like said, he doesn't have an issue using it. If we just take him, he goes no problem and usually does pretty much everything on his own without help or supervision. That said, he doesn't always hold it until he's taken and even if he did, I doubt his teachers are going to be take him regularly to keep him from wetting himself. We tried various reward systems (they all either backfired or didn't work), pull ups, training underwear, and a few other things but nothing worked. The issue is him not letting anyone know he has to go, saying he doesn't have to go when he's asked even if he does have to go, or even going on his own. If he would just start doing those things, we'd be golden. I have no clue how to get him to though. I've tried explaining it to him multiple times in multiple ways (as have my wife, mother, and 16 year old daughter) but he either doesn't get itor doesn't care., My son was 6 when he finally said to us “can I use the potty”. We were overjoyed bc we knew it would mean not having to change mini-elephant sized 6yr old shit diapers. Before that, it was a struggle trying to potty train him. A LOT of meltdowns. But I think because we kept trying, he eventually gave in and decided for himself that he wanted to use the potty. My advice would be to sit him down on the potty (assuming he’ll let you) and have him preoccupied with an iPad or device so he’ll be comfortable.
As for the aggression..unfortunately can’t help you there., For great info and tips on behavior and potty training, check out Molly Johnson (@ theautismconsultant on IG)!
I can imagine how challenging it must be to navigate these waters with your little one. It sounds like you're doing an amazing job advocating for him and seeking out the best solutions., Like said, he doesn't have an issue using it. If we just take him, he goes no problem and usually does pretty much everything on his own without help or supervision. That said, he doesn't always hold it until he's taken and even if he did, I doubt his teachers are going to be take him regularly to keep him from wetting himself. We tried various reward systems (they all either backfired or didn't work), pull ups, training underwear, and a few other things but nothing worked. The issue is him not letting anyone know he has to go, saying he doesn't have to go when he's asked even if he does have to go, or even going on his own. If he would just start doing those things, we'd be golden. I have no clue how to get him to though. I've tried explaining it to him multiple times in multiple ways (as have my wife, mother, and 16 year old daughter) but he either doesn't get itor doesn't care., My son was 6 when he finally said to us “can I use the potty”. We were overjoyed bc we knew it would mean not having to change mini-elephant sized 6yr old shit diapers. Before that, it was a struggle trying to potty train him. A LOT of meltdowns. But I think because we kept trying, he eventually gave in and decided for himself that he wanted to use the potty. My advice would be to sit him down on the potty (assuming he’ll let you) and have him preoccupied with an iPad or device so he’ll be comfortable.
As for the aggression..unfortunately can’t help you there., For great info and tips on behavior and potty training, check out Molly Johnson (@ theautismconsultant on IG)!
I can imagine how challenging it must be to navigate these waters with your little one. It sounds like you're doing an amazing job advocating for him and seeking out the best solutions., Like said, he doesn't have an issue using it. If we just take him, he goes no problem and usually does pretty much everything on his own without help or supervision. That said, he doesn't always hold it until he's taken and even if he did, I doubt his teachers are going to be take him regularly to keep him from wetting himself. We tried various reward systems (they all either backfired or didn't work), pull ups, training underwear, and a few other things but nothing worked. The issue is him not letting anyone know he has to go, saying he doesn't have to go when he's asked even if he does have to go, or even going on his own. If he would just start doing those things, we'd be golden. I have no clue how to get him to though. I've tried explaining it to him multiple times in multiple ways (as have my wife, mother, and 16 year old daughter) but he either doesn't get itor doesn't care., My son was 6 when he finally said to us “can I use the potty”. We were overjoyed bc we knew it would mean not having to change mini-elephant sized 6yr old shit diapers. Before that, it was a struggle trying to potty train him. A LOT of meltdowns. But I think because we kept trying, he eventually gave in and decided for himself that he wanted to use the potty. My advice would be to sit him down on the potty (assuming he’ll let you) and have him preoccupied with an iPad or device so he’ll be comfortable.
As for the aggression..unfortunately can’t help you there., For great info and tips on behavior and potty training, check out Molly Johnson (@ theautismconsultant on IG)!
I can imagine how challenging it must be to navigate these waters with your little one. It sounds like you're doing an amazing job advocating for him and seeking out the best solutions., Like said, he doesn't have an issue using it. If we just take him, he goes no problem and usually does pretty much everything on his own without help or supervision. That said, he doesn't always hold it until he's taken and even if he did, I doubt his teachers are going to be take him regularly to keep him from wetting himself. We tried various reward systems (they all either backfired or didn't work), pull ups, training underwear, and a few other things but nothing worked. The issue is him not letting anyone know he has to go, saying he doesn't have to go when he's asked even if he does have to go, or even going on his own. If he would just start doing those things, we'd be golden. I have no clue how to get him to though. I've tried explaining it to him multiple times in multiple ways (as have my wife, mother, and 16 year old daughter) but he either doesn't get itor doesn't care.
|
I want to end cosleeping + wanting to be higher income yet scared to lose Medicaid
|
Hello, thank you so much to this group. It has been such a positive form of support, I am really thankful we have this sub.
A few things I am struggling with, that I would be grateful for any tips or advice or thoughts on:
My son is almost 4, level three and nonverbal. We cosleep and I really want it to come to an end. He wakes me up several times in the night to make me turn my face so I am facing him, and to have my arms wrapped around him or else he screams all night. It is very uncomfortable sleeping this way. I’m a part of a support group on Facebook and it sounds like they see no problem with cosleeping and they still cosleep with their autistic children even in their teens. Please tell me there can be an end in sight! I can’t continue sleeping this way. I have been in two relationships since he was born, and it really affected those relationships since I couldn’t sleep in the same room as them. I really want to be in a romantic relationship again in the future.
His ABA coordinator thinks I should begin with getting him to sleep on a pad on the floor. There’s no way he would stay on that. Would it be harmful to just have him in the other bedroom and shut the door and let him scream? I NEVER did this when he was a baby, or ever. But I wonder if he is at the age now where it would be okay for him to scream and cry himself to sleep while he gets used to being in his own room.
I am open to any advice and new perspectives!
Of course I don’t want to cause harm to him or be insensitive, but I can’t go on sleeping like this.
He does take melatonin and we have been trying clonodine. They help make him sleepy but they don’t keep him asleep without me. He wakes up if I’m not sleeping with him.
I have been looking into a safe sleep bed and the possibility of one day saving up for one.
Also -
I am a single mom and live with my parents. I want to one day be able to afford living on my own, but if I could afford living on my own then my son and I wouldn’t be on Medicaid and so it seems not worth it. I do fear being in my 40s living with my parents and not being dateable. I am 29 right now.
I have heard of Medicaid waivers and don’t totally understand them, still reading about them. It sounds like there’s only so many given out per year. I don’t want to stay extremely low income just so that I can afford the services he needs. But there’s that awkward income level that makes too much for Medicaid and yet doesn’t make enough to be able to pay for the services needed + afford rent and food.
We are in Ohio by the way.
Thank you for reading.
|
I might get downvoted for saying this but I felt the same way. You have to find loopholes basically. Especially with the way things are now, you either have to stay at poverty level and get government help or you reach a higher level of income but then basically go back to poverty level because you’re now required to pay for everything including healthcare which costs an arm and a leg itself don’t even get me started on how much therapies cost for our kids out of pocket. In my state, we have a program that’s tax exempt and I get paid to be my son’s caretaker. He can still get medical for free by the state but I don’t qualify for any other help except Social Security but even that has a certain limit I can reach. What I did was find work that either paid under the table or found other ways to make cash. Yes it breaks the rules but at the same time I wouldn’t be able to take care of my child unless I had an extra income on the side. You can find waitressing or bartending jobs that pay a small wage but then you get cash tips or something., Girl, I'm a single mom and this title hit me spot on. 🎯, Just an appreciation for the honest and vulnerable post and hoping things get better for you and him., Maybe instead of putting him in a new room alone you could start by both sleeping in his new bed, then when he's used to that put a mattress on the floor and you sleep on the floor in his room and slowly work your way back to your room? Or you stay with him on his bed til he falls asleep, then go back to your own bed? A social story might help too, so it's not as scary and confusing. I didn't do any of this btw, just trying to help brainstorm., Im an engineer and my son is on medicaid. The waiver is a series for documents proving you make too much to qualify for Medicaid. Once the documents are submitted and approved the waiver is approved., I wish i had advice, just know i see you and commend your resolve and strength. Keep up the good work., This is interesting and I don't know how other states work. But our kiddo gets Medicaid simply because of his diagnosis., My kids are on medicaid, his father makes too much for it to be free so we pay a small monthly premium, total of $40 a month which is WAY less than any half as decently coveraged medical would cost us. I am pretty sure it's different depending on which state you are in, the best thing to do is call and ask if it's possible to keep medical with a small premium if you find work that no longer qualifies your kiddo for free medical.
As for the sleeping, my son sleeps on the couch now, it's the best we could do to get him out of our bed, we try to put him in his own but he will wake up and move to the couch or our bed. Hopefully one day he will like to sleep in his own bed., I second the suggestion for the both of you to move together to his room and then you phase out of that room.
My daughter slept with me forever which I was really sick of for a loooong time, but now that she hasn’t for years, I sometimes miss it. Parenting is weird.
Also, I don’t want this to come off the wrong way. I am sincerely not judging you. I was a single mom for a long time and was in a very similar situation to you when my daughter was 4. I get wanting to date and being scared that you may never find someone, but honestly I would focus less on that.
I worked to become totally self sufficient and financially successful and I am now and far beyond what I could have imagined then. It took me a long time to find the person for me because I was really selective and spent a lot of time working on myself and building a life that would be great with or without someone else. I found my partner when I was in a place where I felt the most complete and content with my life.
You’re doing a great job, just keep doing your best every day and things will align., Cosleeping here too! 💜🤗🙏, I did Ferber with my child when he was 2 or so, but I'm not sure if my experience is helpful, because I never coslept. I room shared, so he always had his own bed and I was either in a bed next to his bassinet or on a mattress on his floor. That might be a transitional step.
I had to do Ferber because he got too excited about me being in the room with him, wake up at 2 or 3am, and dive bomb me for the next hour or two. Everyone was tired and cranky.
Ferber worked fine for us. He didn't really get distressed. He complained for about 10 minutes the first night, 5 minutes the second night, and then figured it out.
But my personal philosophy is that sleep is a need, so you have to prioritize it for everyone. I know that I was a bad and even potentially unsafe parent when I was sleep deprived. (Unsafe in the sense that I shouldn't have been driving on that little sleep, not that I lost my temper and hurt him.), Medicaid waivers are available in all 50 states for the most part, but each state drafts their laws and funding for them. For example, in NC we were told "not a chance" with there being a HUGE backlog of applicants, but SC is fully funded with no wait list. Ohio seems to have a 1600+ backlog of applicants and most of the programs are only funded to 6/30/2024 so my only advice would be apply and wait it out. Those waivers are not dependent on income, but on the disability and level of care required.
However... looking for a new employer in your day job might be worth pursuing as well. I always encourage that because especially state/county/local gov positions might not be the most plush salary, but many times their benefits and pension/retirement programs are top notch. One of my good friends lives and works in Ohio and constantly reminds himself he can be making a much better salary elsewhere, but his medical benefits alone keep him around. I say that because perhaps a switch to one of those jobs might give you the medical coverage needed to not be reliant on Medicaid or income restrictions while waiting on a waiver grant!, I bought a safety bed for my son at noahs world beds he will work with your insurance if you can get your doctor to write a specific prescription for the bed or if that doesn't work he gives it to you directly at half price. It's a twin size bed with a full zip mesh enclosure. I love it. He cannot hurt himself. At first he would cry but now he just goes right in and goes to sleep because he is used to the routine and knows he cannot get out. I bought mine with a tax return!
ALSO you need to apply for social security benefits with his diagnosis. That's extra free money each month and it automatically puts him on disability medicaid which has a much higher income limit for you., I don’t have advice on sleeping, but I didn’t want to stay low income forever either and was desperate to find a way to support myself/my daughter comfortably.
I am on food stamps and they mailed me a letter saying they’d pay for my school if I wanted to return to college and pursue a degree so I immediately jumped on it. Im taking online classes at my local community college to pursue a degree in Sonography, but a ton of 2 year degrees pay well and have great benefits + job security.
Being low income it’s super easy to find programs that’ll cover school and in 2.5 years, I will have a degree that pays 90k a year starting with no student loan debt. Def worth looking into if furthering your education interests you!, [removed], Anybody who downvotes you for saying this must be coming from a place of a lot of privilege., Thank you for the solidarity ❤️, For the co-sleeping, this, definitely ease him out. It will take time, but a gentle approach would work best. Also, perhaps trying a weighted blanket? I don’t recommend making him cry over night, I think it could make things worse for you. He just needs reassurance that you are there. Start in his room, move yourself to the floor, then eventually ease out., Ours too, our income wasn't considered. Sucks that it's not that way everywhere., Same here in NY. Are you in the NE or west coast? It seems like coastal cities are more generous about granting Medicaid waivers/deeming than much of the south/midwest., Thank you. This is helpful for me to read., This post/comment was removed for violating the sub's "No ABA Absolutism" policy.
The sub rule states "No non-constructive anti-aba hate; conversely, no “ABA is the only solution for all autistic children” talk." Examples may include such statements as "All ABA is abuse."
Repeated violations of this rule may lead to a sub ban., Hell even with my salary and household - we encourage everyone to find every leverage and loophole possible. Cost of living these days is too much to be throwing out money on anything lol, Nope. Indiana actually., And also, insurance is trash, 100% - just adding that average out of pocket cost into the mix between myself and my son is enough to weep., I might get downvoted for saying this but I felt the same way. You have to find loopholes basically. Especially with the way things are now, you either have to stay at poverty level and get government help or you reach a higher level of income but then basically go back to poverty level because you’re now required to pay for everything including healthcare which costs an arm and a leg itself don’t even get me started on how much therapies cost for our kids out of pocket. In my state, we have a program that’s tax exempt and I get paid to be my son’s caretaker. He can still get medical for free by the state but I don’t qualify for any other help except Social Security but even that has a certain limit I can reach. What I did was find work that either paid under the table or found other ways to make cash. Yes it breaks the rules but at the same time I wouldn’t be able to take care of my child unless I had an extra income on the side. You can find waitressing or bartending jobs that pay a small wage but then you get cash tips or something., Girl, I'm a single mom and this title hit me spot on. 🎯, Just an appreciation for the honest and vulnerable post and hoping things get better for you and him., Maybe instead of putting him in a new room alone you could start by both sleeping in his new bed, then when he's used to that put a mattress on the floor and you sleep on the floor in his room and slowly work your way back to your room? Or you stay with him on his bed til he falls asleep, then go back to your own bed? A social story might help too, so it's not as scary and confusing. I didn't do any of this btw, just trying to help brainstorm., Im an engineer and my son is on medicaid. The waiver is a series for documents proving you make too much to qualify for Medicaid. Once the documents are submitted and approved the waiver is approved., I wish i had advice, just know i see you and commend your resolve and strength. Keep up the good work., This is interesting and I don't know how other states work. But our kiddo gets Medicaid simply because of his diagnosis., My kids are on medicaid, his father makes too much for it to be free so we pay a small monthly premium, total of $40 a month which is WAY less than any half as decently coveraged medical would cost us. I am pretty sure it's different depending on which state you are in, the best thing to do is call and ask if it's possible to keep medical with a small premium if you find work that no longer qualifies your kiddo for free medical.
As for the sleeping, my son sleeps on the couch now, it's the best we could do to get him out of our bed, we try to put him in his own but he will wake up and move to the couch or our bed. Hopefully one day he will like to sleep in his own bed., I second the suggestion for the both of you to move together to his room and then you phase out of that room.
My daughter slept with me forever which I was really sick of for a loooong time, but now that she hasn’t for years, I sometimes miss it. Parenting is weird.
Also, I don’t want this to come off the wrong way. I am sincerely not judging you. I was a single mom for a long time and was in a very similar situation to you when my daughter was 4. I get wanting to date and being scared that you may never find someone, but honestly I would focus less on that.
I worked to become totally self sufficient and financially successful and I am now and far beyond what I could have imagined then. It took me a long time to find the person for me because I was really selective and spent a lot of time working on myself and building a life that would be great with or without someone else. I found my partner when I was in a place where I felt the most complete and content with my life.
You’re doing a great job, just keep doing your best every day and things will align., Cosleeping here too! 💜🤗🙏, I did Ferber with my child when he was 2 or so, but I'm not sure if my experience is helpful, because I never coslept. I room shared, so he always had his own bed and I was either in a bed next to his bassinet or on a mattress on his floor. That might be a transitional step.
I had to do Ferber because he got too excited about me being in the room with him, wake up at 2 or 3am, and dive bomb me for the next hour or two. Everyone was tired and cranky.
Ferber worked fine for us. He didn't really get distressed. He complained for about 10 minutes the first night, 5 minutes the second night, and then figured it out.
But my personal philosophy is that sleep is a need, so you have to prioritize it for everyone. I know that I was a bad and even potentially unsafe parent when I was sleep deprived. (Unsafe in the sense that I shouldn't have been driving on that little sleep, not that I lost my temper and hurt him.), Medicaid waivers are available in all 50 states for the most part, but each state drafts their laws and funding for them. For example, in NC we were told "not a chance" with there being a HUGE backlog of applicants, but SC is fully funded with no wait list. Ohio seems to have a 1600+ backlog of applicants and most of the programs are only funded to 6/30/2024 so my only advice would be apply and wait it out. Those waivers are not dependent on income, but on the disability and level of care required.
However... looking for a new employer in your day job might be worth pursuing as well. I always encourage that because especially state/county/local gov positions might not be the most plush salary, but many times their benefits and pension/retirement programs are top notch. One of my good friends lives and works in Ohio and constantly reminds himself he can be making a much better salary elsewhere, but his medical benefits alone keep him around. I say that because perhaps a switch to one of those jobs might give you the medical coverage needed to not be reliant on Medicaid or income restrictions while waiting on a waiver grant!, I bought a safety bed for my son at noahs world beds he will work with your insurance if you can get your doctor to write a specific prescription for the bed or if that doesn't work he gives it to you directly at half price. It's a twin size bed with a full zip mesh enclosure. I love it. He cannot hurt himself. At first he would cry but now he just goes right in and goes to sleep because he is used to the routine and knows he cannot get out. I bought mine with a tax return!
ALSO you need to apply for social security benefits with his diagnosis. That's extra free money each month and it automatically puts him on disability medicaid which has a much higher income limit for you., I don’t have advice on sleeping, but I didn’t want to stay low income forever either and was desperate to find a way to support myself/my daughter comfortably.
I am on food stamps and they mailed me a letter saying they’d pay for my school if I wanted to return to college and pursue a degree so I immediately jumped on it. Im taking online classes at my local community college to pursue a degree in Sonography, but a ton of 2 year degrees pay well and have great benefits + job security.
Being low income it’s super easy to find programs that’ll cover school and in 2.5 years, I will have a degree that pays 90k a year starting with no student loan debt. Def worth looking into if furthering your education interests you!, [removed], Anybody who downvotes you for saying this must be coming from a place of a lot of privilege., Thank you for the solidarity ❤️, For the co-sleeping, this, definitely ease him out. It will take time, but a gentle approach would work best. Also, perhaps trying a weighted blanket? I don’t recommend making him cry over night, I think it could make things worse for you. He just needs reassurance that you are there. Start in his room, move yourself to the floor, then eventually ease out., Ours too, our income wasn't considered. Sucks that it's not that way everywhere., Same here in NY. Are you in the NE or west coast? It seems like coastal cities are more generous about granting Medicaid waivers/deeming than much of the south/midwest., Thank you. This is helpful for me to read., This post/comment was removed for violating the sub's "No ABA Absolutism" policy.
The sub rule states "No non-constructive anti-aba hate; conversely, no “ABA is the only solution for all autistic children” talk." Examples may include such statements as "All ABA is abuse."
Repeated violations of this rule may lead to a sub ban., Hell even with my salary and household - we encourage everyone to find every leverage and loophole possible. Cost of living these days is too much to be throwing out money on anything lol, Nope. Indiana actually., And also, insurance is trash, 100% - just adding that average out of pocket cost into the mix between myself and my son is enough to weep., I might get downvoted for saying this but I felt the same way. You have to find loopholes basically. Especially with the way things are now, you either have to stay at poverty level and get government help or you reach a higher level of income but then basically go back to poverty level because you’re now required to pay for everything including healthcare which costs an arm and a leg itself don’t even get me started on how much therapies cost for our kids out of pocket. In my state, we have a program that’s tax exempt and I get paid to be my son’s caretaker. He can still get medical for free by the state but I don’t qualify for any other help except Social Security but even that has a certain limit I can reach. What I did was find work that either paid under the table or found other ways to make cash. Yes it breaks the rules but at the same time I wouldn’t be able to take care of my child unless I had an extra income on the side. You can find waitressing or bartending jobs that pay a small wage but then you get cash tips or something., Girl, I'm a single mom and this title hit me spot on. 🎯, Just an appreciation for the honest and vulnerable post and hoping things get better for you and him., Maybe instead of putting him in a new room alone you could start by both sleeping in his new bed, then when he's used to that put a mattress on the floor and you sleep on the floor in his room and slowly work your way back to your room? Or you stay with him on his bed til he falls asleep, then go back to your own bed? A social story might help too, so it's not as scary and confusing. I didn't do any of this btw, just trying to help brainstorm., Im an engineer and my son is on medicaid. The waiver is a series for documents proving you make too much to qualify for Medicaid. Once the documents are submitted and approved the waiver is approved., I wish i had advice, just know i see you and commend your resolve and strength. Keep up the good work., This is interesting and I don't know how other states work. But our kiddo gets Medicaid simply because of his diagnosis., My kids are on medicaid, his father makes too much for it to be free so we pay a small monthly premium, total of $40 a month which is WAY less than any half as decently coveraged medical would cost us. I am pretty sure it's different depending on which state you are in, the best thing to do is call and ask if it's possible to keep medical with a small premium if you find work that no longer qualifies your kiddo for free medical.
As for the sleeping, my son sleeps on the couch now, it's the best we could do to get him out of our bed, we try to put him in his own but he will wake up and move to the couch or our bed. Hopefully one day he will like to sleep in his own bed., I second the suggestion for the both of you to move together to his room and then you phase out of that room.
My daughter slept with me forever which I was really sick of for a loooong time, but now that she hasn’t for years, I sometimes miss it. Parenting is weird.
Also, I don’t want this to come off the wrong way. I am sincerely not judging you. I was a single mom for a long time and was in a very similar situation to you when my daughter was 4. I get wanting to date and being scared that you may never find someone, but honestly I would focus less on that.
I worked to become totally self sufficient and financially successful and I am now and far beyond what I could have imagined then. It took me a long time to find the person for me because I was really selective and spent a lot of time working on myself and building a life that would be great with or without someone else. I found my partner when I was in a place where I felt the most complete and content with my life.
You’re doing a great job, just keep doing your best every day and things will align., Cosleeping here too! 💜🤗🙏, I did Ferber with my child when he was 2 or so, but I'm not sure if my experience is helpful, because I never coslept. I room shared, so he always had his own bed and I was either in a bed next to his bassinet or on a mattress on his floor. That might be a transitional step.
I had to do Ferber because he got too excited about me being in the room with him, wake up at 2 or 3am, and dive bomb me for the next hour or two. Everyone was tired and cranky.
Ferber worked fine for us. He didn't really get distressed. He complained for about 10 minutes the first night, 5 minutes the second night, and then figured it out.
But my personal philosophy is that sleep is a need, so you have to prioritize it for everyone. I know that I was a bad and even potentially unsafe parent when I was sleep deprived. (Unsafe in the sense that I shouldn't have been driving on that little sleep, not that I lost my temper and hurt him.), Medicaid waivers are available in all 50 states for the most part, but each state drafts their laws and funding for them. For example, in NC we were told "not a chance" with there being a HUGE backlog of applicants, but SC is fully funded with no wait list. Ohio seems to have a 1600+ backlog of applicants and most of the programs are only funded to 6/30/2024 so my only advice would be apply and wait it out. Those waivers are not dependent on income, but on the disability and level of care required.
However... looking for a new employer in your day job might be worth pursuing as well. I always encourage that because especially state/county/local gov positions might not be the most plush salary, but many times their benefits and pension/retirement programs are top notch. One of my good friends lives and works in Ohio and constantly reminds himself he can be making a much better salary elsewhere, but his medical benefits alone keep him around. I say that because perhaps a switch to one of those jobs might give you the medical coverage needed to not be reliant on Medicaid or income restrictions while waiting on a waiver grant!, I bought a safety bed for my son at noahs world beds he will work with your insurance if you can get your doctor to write a specific prescription for the bed or if that doesn't work he gives it to you directly at half price. It's a twin size bed with a full zip mesh enclosure. I love it. He cannot hurt himself. At first he would cry but now he just goes right in and goes to sleep because he is used to the routine and knows he cannot get out. I bought mine with a tax return!
ALSO you need to apply for social security benefits with his diagnosis. That's extra free money each month and it automatically puts him on disability medicaid which has a much higher income limit for you., I don’t have advice on sleeping, but I didn’t want to stay low income forever either and was desperate to find a way to support myself/my daughter comfortably.
I am on food stamps and they mailed me a letter saying they’d pay for my school if I wanted to return to college and pursue a degree so I immediately jumped on it. Im taking online classes at my local community college to pursue a degree in Sonography, but a ton of 2 year degrees pay well and have great benefits + job security.
Being low income it’s super easy to find programs that’ll cover school and in 2.5 years, I will have a degree that pays 90k a year starting with no student loan debt. Def worth looking into if furthering your education interests you!, [removed], Anybody who downvotes you for saying this must be coming from a place of a lot of privilege., Thank you for the solidarity ❤️, For the co-sleeping, this, definitely ease him out. It will take time, but a gentle approach would work best. Also, perhaps trying a weighted blanket? I don’t recommend making him cry over night, I think it could make things worse for you. He just needs reassurance that you are there. Start in his room, move yourself to the floor, then eventually ease out., Ours too, our income wasn't considered. Sucks that it's not that way everywhere., Same here in NY. Are you in the NE or west coast? It seems like coastal cities are more generous about granting Medicaid waivers/deeming than much of the south/midwest., Thank you. This is helpful for me to read., This post/comment was removed for violating the sub's "No ABA Absolutism" policy.
The sub rule states "No non-constructive anti-aba hate; conversely, no “ABA is the only solution for all autistic children” talk." Examples may include such statements as "All ABA is abuse."
Repeated violations of this rule may lead to a sub ban., Hell even with my salary and household - we encourage everyone to find every leverage and loophole possible. Cost of living these days is too much to be throwing out money on anything lol, Nope. Indiana actually., And also, insurance is trash, 100% - just adding that average out of pocket cost into the mix between myself and my son is enough to weep., I might get downvoted for saying this but I felt the same way. You have to find loopholes basically. Especially with the way things are now, you either have to stay at poverty level and get government help or you reach a higher level of income but then basically go back to poverty level because you’re now required to pay for everything including healthcare which costs an arm and a leg itself don’t even get me started on how much therapies cost for our kids out of pocket. In my state, we have a program that’s tax exempt and I get paid to be my son’s caretaker. He can still get medical for free by the state but I don’t qualify for any other help except Social Security but even that has a certain limit I can reach. What I did was find work that either paid under the table or found other ways to make cash. Yes it breaks the rules but at the same time I wouldn’t be able to take care of my child unless I had an extra income on the side. You can find waitressing or bartending jobs that pay a small wage but then you get cash tips or something., Girl, I'm a single mom and this title hit me spot on. 🎯, Just an appreciation for the honest and vulnerable post and hoping things get better for you and him., Maybe instead of putting him in a new room alone you could start by both sleeping in his new bed, then when he's used to that put a mattress on the floor and you sleep on the floor in his room and slowly work your way back to your room? Or you stay with him on his bed til he falls asleep, then go back to your own bed? A social story might help too, so it's not as scary and confusing. I didn't do any of this btw, just trying to help brainstorm., Im an engineer and my son is on medicaid. The waiver is a series for documents proving you make too much to qualify for Medicaid. Once the documents are submitted and approved the waiver is approved., I wish i had advice, just know i see you and commend your resolve and strength. Keep up the good work., This is interesting and I don't know how other states work. But our kiddo gets Medicaid simply because of his diagnosis., My kids are on medicaid, his father makes too much for it to be free so we pay a small monthly premium, total of $40 a month which is WAY less than any half as decently coveraged medical would cost us. I am pretty sure it's different depending on which state you are in, the best thing to do is call and ask if it's possible to keep medical with a small premium if you find work that no longer qualifies your kiddo for free medical.
As for the sleeping, my son sleeps on the couch now, it's the best we could do to get him out of our bed, we try to put him in his own but he will wake up and move to the couch or our bed. Hopefully one day he will like to sleep in his own bed., I second the suggestion for the both of you to move together to his room and then you phase out of that room.
My daughter slept with me forever which I was really sick of for a loooong time, but now that she hasn’t for years, I sometimes miss it. Parenting is weird.
Also, I don’t want this to come off the wrong way. I am sincerely not judging you. I was a single mom for a long time and was in a very similar situation to you when my daughter was 4. I get wanting to date and being scared that you may never find someone, but honestly I would focus less on that.
I worked to become totally self sufficient and financially successful and I am now and far beyond what I could have imagined then. It took me a long time to find the person for me because I was really selective and spent a lot of time working on myself and building a life that would be great with or without someone else. I found my partner when I was in a place where I felt the most complete and content with my life.
You’re doing a great job, just keep doing your best every day and things will align., Cosleeping here too! 💜🤗🙏, I did Ferber with my child when he was 2 or so, but I'm not sure if my experience is helpful, because I never coslept. I room shared, so he always had his own bed and I was either in a bed next to his bassinet or on a mattress on his floor. That might be a transitional step.
I had to do Ferber because he got too excited about me being in the room with him, wake up at 2 or 3am, and dive bomb me for the next hour or two. Everyone was tired and cranky.
Ferber worked fine for us. He didn't really get distressed. He complained for about 10 minutes the first night, 5 minutes the second night, and then figured it out.
But my personal philosophy is that sleep is a need, so you have to prioritize it for everyone. I know that I was a bad and even potentially unsafe parent when I was sleep deprived. (Unsafe in the sense that I shouldn't have been driving on that little sleep, not that I lost my temper and hurt him.), Medicaid waivers are available in all 50 states for the most part, but each state drafts their laws and funding for them. For example, in NC we were told "not a chance" with there being a HUGE backlog of applicants, but SC is fully funded with no wait list. Ohio seems to have a 1600+ backlog of applicants and most of the programs are only funded to 6/30/2024 so my only advice would be apply and wait it out. Those waivers are not dependent on income, but on the disability and level of care required.
However... looking for a new employer in your day job might be worth pursuing as well. I always encourage that because especially state/county/local gov positions might not be the most plush salary, but many times their benefits and pension/retirement programs are top notch. One of my good friends lives and works in Ohio and constantly reminds himself he can be making a much better salary elsewhere, but his medical benefits alone keep him around. I say that because perhaps a switch to one of those jobs might give you the medical coverage needed to not be reliant on Medicaid or income restrictions while waiting on a waiver grant!, I bought a safety bed for my son at noahs world beds he will work with your insurance if you can get your doctor to write a specific prescription for the bed or if that doesn't work he gives it to you directly at half price. It's a twin size bed with a full zip mesh enclosure. I love it. He cannot hurt himself. At first he would cry but now he just goes right in and goes to sleep because he is used to the routine and knows he cannot get out. I bought mine with a tax return!
ALSO you need to apply for social security benefits with his diagnosis. That's extra free money each month and it automatically puts him on disability medicaid which has a much higher income limit for you., I don’t have advice on sleeping, but I didn’t want to stay low income forever either and was desperate to find a way to support myself/my daughter comfortably.
I am on food stamps and they mailed me a letter saying they’d pay for my school if I wanted to return to college and pursue a degree so I immediately jumped on it. Im taking online classes at my local community college to pursue a degree in Sonography, but a ton of 2 year degrees pay well and have great benefits + job security.
Being low income it’s super easy to find programs that’ll cover school and in 2.5 years, I will have a degree that pays 90k a year starting with no student loan debt. Def worth looking into if furthering your education interests you!, [removed], Anybody who downvotes you for saying this must be coming from a place of a lot of privilege., Thank you for the solidarity ❤️, For the co-sleeping, this, definitely ease him out. It will take time, but a gentle approach would work best. Also, perhaps trying a weighted blanket? I don’t recommend making him cry over night, I think it could make things worse for you. He just needs reassurance that you are there. Start in his room, move yourself to the floor, then eventually ease out., Ours too, our income wasn't considered. Sucks that it's not that way everywhere., Same here in NY. Are you in the NE or west coast? It seems like coastal cities are more generous about granting Medicaid waivers/deeming than much of the south/midwest., Thank you. This is helpful for me to read., This post/comment was removed for violating the sub's "No ABA Absolutism" policy.
The sub rule states "No non-constructive anti-aba hate; conversely, no “ABA is the only solution for all autistic children” talk." Examples may include such statements as "All ABA is abuse."
Repeated violations of this rule may lead to a sub ban., Hell even with my salary and household - we encourage everyone to find every leverage and loophole possible. Cost of living these days is too much to be throwing out money on anything lol, Nope. Indiana actually., And also, insurance is trash, 100% - just adding that average out of pocket cost into the mix between myself and my son is enough to weep.
|
I want to give the kids in my son's class a gift with explanation.
|
My son is starting kindergarten and I was thinking it would be nice to give his new classmates a little gift with a explanation of who he is and what he has. With the teachers permission of course. What do you all think? What could I do/give? I don't have a ton of money or time to spare on this. It just popped in my head.
|
I don’t think you need to do this. Instead, I would ask the teacher how they handle explaining diversity and differences in the classroom?
One student in my kiddos class handed out small booklets on the value of diversity in their birthday goodie bag. But these are also big conversations, and I would talk to the teacher about how to navigate this?, I don't think you need to do this either. I thought about doing it for my son when he started preschool, and then I was, no, he doesn't need to justify who he is or why he is there. He is smart, interesting, and fun!
|
I want to move for better resources
|
I know some
People will say it’s the same every where but’s it’s not I live in the south where healthcare is 20 years behind. They are so clueless in Mississippi where I originally was they still
Think girls can’t have autism.
Colorado seems to be the best.
I have a child that is severe she’s a level 3 but I’ve been reading and I think she has regressive autism. I’d like for her to have. Neurologist and nobody has recommended that which I’m
Surprised. It’s like we will make mile stones and the. We go backwards again constantly.
It’s hard to get any help here like I’d have to just up and leave and don’t know where I’m
Going but that’s how I made it where I am now and got her diagnoses.
If that’s what it takes I think it’s well worth it.
They won’t let them
Into public school here and ppl say “sue them”.
That is a very dangerous game to play in a southern small town…
Everybody knows everybody…
All the kids that have special needs here they either go to school 2 days a week or not al all they are homeschooled.
Thankfully she has her ABA school.
I feel blessed for them but that’s the only support she has but she need medical support in which they lack…
They are just so behind.
The GI drs here don't know that the autistic ric kids have different issues with their gut they just think
they hold
poop
on purpose…. the bacteria in their gut is different. This leads to all sorts of issues I give my kid a probiotic and the healthiest diet she will let me. It’s a mess here…. I know a lot of you may feel the same depending where you’re at but if you look at the map for autism you’ll
See there’s more things in other places for others.
If you have a place to recommend to move let me know…
|
I live in Oakland County michigan. Walled lake consolidated schools. They have had my son level 3 in preschool for free 3 days a week since he was 3 years old. Next year he starts full time kindergarten in the autism room. There are a total of 3 elementary schools in our district with special room specifically for autistic kiddos.
When we purchased our home our number one goal was a good school system and it's paying off now.
We also have this place called "the Oxford center" in whitmore lake michigan. They take a wonderful approach at therapy and holistic healing techniques.
I am not sure what the best location in the country is but I feel like we are in a great position for growth., The hardest piece of this, at least from my perspective, is affordability. If you can afford whatever, the world truly is your oyster. From what I've seen, the places that have the most resources are VHCOL. You have to be realistic about that part. Otherwise, I think Colorado is a lovely place. I live in the PNW, & while I wouldn't say things are ideal, I'm able to get a lot of things done with lots of persistence. The options exist, if you will. I did move to a larger, more expensive city for more infrastructure, & it's difficult, especially when you factor in lack of support or childcare deficits.
Childcare is a much bigger issue in some places than others; there are so many child care deserts, & it's a whole different ballgame when your child is disabled. Yes, there are programs and available funds, but the shortage of childcare workers in general means you still don't have the childcare you're eligible for, such as with respite. A huge thing people struggle with when there's a disabled child is financial insecurity due to lack of adequate care. I have no idea what your situation is, but I imagine there's a huge cost of living difference between there and many other places in the nation. The more schools and medical facilities, the more options, the higher price of living. I agree with you that it's very necessary, and I understand your mindset about doing whatever it takes because I have the same.
Other people have moved for this very same reason, and I hope they respond to you. I've seen a few of these posts, maybe even do a subreddit search for people relocating for services., We're from Los Angeles area CA and live there, but for 2 years of the pandemic we were in Kansas City, MO. My husband is an occupational therapist and advanced in his career which brought us back to our home state. Fast forward 2 years, he hired an OT who wanted to switch from pediatrics to adults. She came from the KC area. We've spoken to her about our struggles with services for our son. She told us that during her career as a peds OT, the best place she ever saw for kids services was Overland Park, Kansas which is on the Kansas side of the Kansas City divide. I can't say a single bad word about our time in KC even though it's been in the news for some problems lately. Every city has their problems, KC is no exception but I can honestly say it was the first place I ever lived where I felt a swell of pride telling people I lived there. Their new soccer stadium raises the bar for inclusivity and I definitely think you should give it consideration., I’m from MS and while we lived there they just wanted to say our son had a speech delay at 2.5yrs. I have other autistic family members and it was obvious he was autistic from his first birthday. My husband re-enlisted for insurance and within a few months of being at our new location abroad, our son was diagnosed with level 3 autism, speech delay, and global developmental delay. At almost 3 he was completely non-verbal but had vocal stems. The military moved us on companionate re-assignment to San Diego for services. There is so much more to offer here compared to what I’ve seen in MS. We get 20 hours of ABA a week (starting 40 hour weeks in a month), parent training sessions, respite care, speech therapy, and on the waitlist for occupational therapy. Peds through an autism research center, developmental peds. They have eating therapies as well but luckily we don’t have any issues with food. Everyone we’ve worked with here has been so caring with him. The downside is it’s insanely expensive to live here. Moving from MS to CA without the military wouldn’t be possible for us right now. That being said, services are 10/10 in my opinion. In just a few months of being here he sings songs, gained functional words, labels things, started following some directions, started pointing for what he wants, started interacting with peers and his sibling, less tantrums, and started showing us affection.
I see on social media the struggles of parents back home and it breaks my heart that MS is so behind regarding autism services given how many kids are being diagnosed today. Every child deserves access to the services., I'm not sure where in Mississippi you are but this hasn't been my experience at all so far. If you wanna message me maybe I can try and help? Have you been to children's hospital in Jackson?, I came to these comments to praise MI 💙 Our son starts special education preschool next week and he’s almost 3. He already has an IEP with our school district. The speech and OT we have had so far were fantastic. Everyone is so supportive. The COL here is reasonable too., I love hearing this that is so amazing! I’m
So happy for you thank you for informing me!, I just need to know how/ where is best. There’s way better things in bigger areas I have to have it. For my mom to get cancer treatment we visited 6 different states before finding a spot. It’s insane…. I’ve seen YouTube videos of ppl moving due to the same
Reason…, Thanks! I’ll look into it :), I moved to a bit of a better place but still in the south. And all the south is pretty much lacking but this place she has more stuff. But the medical care is so bad. It is sad and heart breaking my friend gave her child to a place they have in Jackson they keep the kids permanently. I can’t judge but I wouldn’t because nobody is going to treat your kid like you… but that’s the only way they do it.
In Mississippi ABA and speech and OT are non existent. I want to go to California bad…, I’m
Not in Mississippi by there’s a home that keeps your kid there permanently and they never go to school if that’s what you mean., Omg the COL is so much better in Michigan too! I feel like this isn't the first time I'm hearing about Michigan being great for autistic children. I feel kind of jealous, at least after the threat of snow., ❤️ I’m
Glad to hear that sounds like another world!, It’s definitely lacking. I had a cousin who didn’t get diagnosed until teen years even though we knew. Facilities are a last resort for me, only if he got so aggressive that he was a danger to myself and his brother. I would put my life on the line for this boy and even if we didn’t have access to the services we have I’d be busting my a** to do everything I could at home. There are a lot of resources online and I’ve utilized so many practices that have helped him make progress even before starting services. You just have to do the best you can, parents know their child like no one else and we just have to do the best we can. While we lived abroad and there were no services I made a friend who was previously an ABA tech and she was so amazing interacting with my child. She’s the first friend I’ve made that doesn’t judge him/us and actually understands and empowers him. The military usually relocates families to San Diego, Washington state, Virginia Beach, Colorado, or Texas for autism service availability so you can also look into those locations., I know there are a few, parents choose to do that...those are everywhere though. My daughter has speech and is starting ot. Aba is around here but if we choose to do it it's an hour away. But it's here. It's not perfect here but I haven't had a hard time at all. Maybe it depends on the area., My daughter is so severe and her therapist wouldn’t be surprised if she had brain seizures but that’s a kind you can’t see. I’ve had her tested but you have to test them while they are having it which means you have to catch them in the act which is hard. She regresses a lot and there has to be a reason for that….
We will reach milestones and start making progress then go backwards.
She is aggressive because she can’t speak so she gets frustrated and will hit scratch and bite. She’s bitten a lot of therapist but she does well it depends on the person aswell (whoever she’s interacting with)., I want to live to San Diego so bad I have an aunt there by they are so WEIRD my dad just died and they will not talk to me it’s so odd. And I can’t make them so…, I’ve actually looked into silent seizures myself and want to rule that out at some point. They will admit them to track them over 24+ hours straight. My son will easily outgrow me bc I’m barely over 5 foot and he takes after his father and is 90th percentile. At 3 yrs he’s already over half my height. Thankfully since he’s got some words now the frustration has lessened and he’s less angry all the time. We’re working on nice hands. Any time my son gets sick or isn’t feeling well he will regress a little and it’s so hard to see. I’m so sorry you’re dealing with this. It isn’t for the weak., They were supposed to do that and completely dropped the ball on that and sent us home after traveling hours and even lost test results. But thanks it’s
Hard for everyone with living in certain areas and even then it’s still more difficult than the average parent. I’m glad to hear he’s started talking more that’s awesome., That’s insane! I’m so sorry. Some days I’m telling myself “parenting was never supposed to be this hard” but I also believe you’re given the child you can handle. It may push you to, or even past your limits some days but in the end they’re worth it all., I’d like to believe people with lots of empathy ended up being autistic parents but that’s not always been the case mostly it has. I’ve seen like two meanies. And I think we are given what we need also. I’ve learned a lot there’s a whole world full of so many kid that are ostracized. A lot of adults are not great people…also kids are way cooler., I live in Oakland County michigan. Walled lake consolidated schools. They have had my son level 3 in preschool for free 3 days a week since he was 3 years old. Next year he starts full time kindergarten in the autism room. There are a total of 3 elementary schools in our district with special room specifically for autistic kiddos.
When we purchased our home our number one goal was a good school system and it's paying off now.
We also have this place called "the Oxford center" in whitmore lake michigan. They take a wonderful approach at therapy and holistic healing techniques.
I am not sure what the best location in the country is but I feel like we are in a great position for growth., The hardest piece of this, at least from my perspective, is affordability. If you can afford whatever, the world truly is your oyster. From what I've seen, the places that have the most resources are VHCOL. You have to be realistic about that part. Otherwise, I think Colorado is a lovely place. I live in the PNW, & while I wouldn't say things are ideal, I'm able to get a lot of things done with lots of persistence. The options exist, if you will. I did move to a larger, more expensive city for more infrastructure, & it's difficult, especially when you factor in lack of support or childcare deficits.
Childcare is a much bigger issue in some places than others; there are so many child care deserts, & it's a whole different ballgame when your child is disabled. Yes, there are programs and available funds, but the shortage of childcare workers in general means you still don't have the childcare you're eligible for, such as with respite. A huge thing people struggle with when there's a disabled child is financial insecurity due to lack of adequate care. I have no idea what your situation is, but I imagine there's a huge cost of living difference between there and many other places in the nation. The more schools and medical facilities, the more options, the higher price of living. I agree with you that it's very necessary, and I understand your mindset about doing whatever it takes because I have the same.
Other people have moved for this very same reason, and I hope they respond to you. I've seen a few of these posts, maybe even do a subreddit search for people relocating for services., We're from Los Angeles area CA and live there, but for 2 years of the pandemic we were in Kansas City, MO. My husband is an occupational therapist and advanced in his career which brought us back to our home state. Fast forward 2 years, he hired an OT who wanted to switch from pediatrics to adults. She came from the KC area. We've spoken to her about our struggles with services for our son. She told us that during her career as a peds OT, the best place she ever saw for kids services was Overland Park, Kansas which is on the Kansas side of the Kansas City divide. I can't say a single bad word about our time in KC even though it's been in the news for some problems lately. Every city has their problems, KC is no exception but I can honestly say it was the first place I ever lived where I felt a swell of pride telling people I lived there. Their new soccer stadium raises the bar for inclusivity and I definitely think you should give it consideration., I’m from MS and while we lived there they just wanted to say our son had a speech delay at 2.5yrs. I have other autistic family members and it was obvious he was autistic from his first birthday. My husband re-enlisted for insurance and within a few months of being at our new location abroad, our son was diagnosed with level 3 autism, speech delay, and global developmental delay. At almost 3 he was completely non-verbal but had vocal stems. The military moved us on companionate re-assignment to San Diego for services. There is so much more to offer here compared to what I’ve seen in MS. We get 20 hours of ABA a week (starting 40 hour weeks in a month), parent training sessions, respite care, speech therapy, and on the waitlist for occupational therapy. Peds through an autism research center, developmental peds. They have eating therapies as well but luckily we don’t have any issues with food. Everyone we’ve worked with here has been so caring with him. The downside is it’s insanely expensive to live here. Moving from MS to CA without the military wouldn’t be possible for us right now. That being said, services are 10/10 in my opinion. In just a few months of being here he sings songs, gained functional words, labels things, started following some directions, started pointing for what he wants, started interacting with peers and his sibling, less tantrums, and started showing us affection.
I see on social media the struggles of parents back home and it breaks my heart that MS is so behind regarding autism services given how many kids are being diagnosed today. Every child deserves access to the services., I'm not sure where in Mississippi you are but this hasn't been my experience at all so far. If you wanna message me maybe I can try and help? Have you been to children's hospital in Jackson?, I came to these comments to praise MI 💙 Our son starts special education preschool next week and he’s almost 3. He already has an IEP with our school district. The speech and OT we have had so far were fantastic. Everyone is so supportive. The COL here is reasonable too., I love hearing this that is so amazing! I’m
So happy for you thank you for informing me!, I just need to know how/ where is best. There’s way better things in bigger areas I have to have it. For my mom to get cancer treatment we visited 6 different states before finding a spot. It’s insane…. I’ve seen YouTube videos of ppl moving due to the same
Reason…, Thanks! I’ll look into it :), I moved to a bit of a better place but still in the south. And all the south is pretty much lacking but this place she has more stuff. But the medical care is so bad. It is sad and heart breaking my friend gave her child to a place they have in Jackson they keep the kids permanently. I can’t judge but I wouldn’t because nobody is going to treat your kid like you… but that’s the only way they do it.
In Mississippi ABA and speech and OT are non existent. I want to go to California bad…, I’m
Not in Mississippi by there’s a home that keeps your kid there permanently and they never go to school if that’s what you mean., Omg the COL is so much better in Michigan too! I feel like this isn't the first time I'm hearing about Michigan being great for autistic children. I feel kind of jealous, at least after the threat of snow., ❤️ I’m
Glad to hear that sounds like another world!, It’s definitely lacking. I had a cousin who didn’t get diagnosed until teen years even though we knew. Facilities are a last resort for me, only if he got so aggressive that he was a danger to myself and his brother. I would put my life on the line for this boy and even if we didn’t have access to the services we have I’d be busting my a** to do everything I could at home. There are a lot of resources online and I’ve utilized so many practices that have helped him make progress even before starting services. You just have to do the best you can, parents know their child like no one else and we just have to do the best we can. While we lived abroad and there were no services I made a friend who was previously an ABA tech and she was so amazing interacting with my child. She’s the first friend I’ve made that doesn’t judge him/us and actually understands and empowers him. The military usually relocates families to San Diego, Washington state, Virginia Beach, Colorado, or Texas for autism service availability so you can also look into those locations., I know there are a few, parents choose to do that...those are everywhere though. My daughter has speech and is starting ot. Aba is around here but if we choose to do it it's an hour away. But it's here. It's not perfect here but I haven't had a hard time at all. Maybe it depends on the area., My daughter is so severe and her therapist wouldn’t be surprised if she had brain seizures but that’s a kind you can’t see. I’ve had her tested but you have to test them while they are having it which means you have to catch them in the act which is hard. She regresses a lot and there has to be a reason for that….
We will reach milestones and start making progress then go backwards.
She is aggressive because she can’t speak so she gets frustrated and will hit scratch and bite. She’s bitten a lot of therapist but she does well it depends on the person aswell (whoever she’s interacting with)., I want to live to San Diego so bad I have an aunt there by they are so WEIRD my dad just died and they will not talk to me it’s so odd. And I can’t make them so…, I’ve actually looked into silent seizures myself and want to rule that out at some point. They will admit them to track them over 24+ hours straight. My son will easily outgrow me bc I’m barely over 5 foot and he takes after his father and is 90th percentile. At 3 yrs he’s already over half my height. Thankfully since he’s got some words now the frustration has lessened and he’s less angry all the time. We’re working on nice hands. Any time my son gets sick or isn’t feeling well he will regress a little and it’s so hard to see. I’m so sorry you’re dealing with this. It isn’t for the weak., They were supposed to do that and completely dropped the ball on that and sent us home after traveling hours and even lost test results. But thanks it’s
Hard for everyone with living in certain areas and even then it’s still more difficult than the average parent. I’m glad to hear he’s started talking more that’s awesome., That’s insane! I’m so sorry. Some days I’m telling myself “parenting was never supposed to be this hard” but I also believe you’re given the child you can handle. It may push you to, or even past your limits some days but in the end they’re worth it all., I’d like to believe people with lots of empathy ended up being autistic parents but that’s not always been the case mostly it has. I’ve seen like two meanies. And I think we are given what we need also. I’ve learned a lot there’s a whole world full of so many kid that are ostracized. A lot of adults are not great people…also kids are way cooler., I live in Oakland County michigan. Walled lake consolidated schools. They have had my son level 3 in preschool for free 3 days a week since he was 3 years old. Next year he starts full time kindergarten in the autism room. There are a total of 3 elementary schools in our district with special room specifically for autistic kiddos.
When we purchased our home our number one goal was a good school system and it's paying off now.
We also have this place called "the Oxford center" in whitmore lake michigan. They take a wonderful approach at therapy and holistic healing techniques.
I am not sure what the best location in the country is but I feel like we are in a great position for growth., The hardest piece of this, at least from my perspective, is affordability. If you can afford whatever, the world truly is your oyster. From what I've seen, the places that have the most resources are VHCOL. You have to be realistic about that part. Otherwise, I think Colorado is a lovely place. I live in the PNW, & while I wouldn't say things are ideal, I'm able to get a lot of things done with lots of persistence. The options exist, if you will. I did move to a larger, more expensive city for more infrastructure, & it's difficult, especially when you factor in lack of support or childcare deficits.
Childcare is a much bigger issue in some places than others; there are so many child care deserts, & it's a whole different ballgame when your child is disabled. Yes, there are programs and available funds, but the shortage of childcare workers in general means you still don't have the childcare you're eligible for, such as with respite. A huge thing people struggle with when there's a disabled child is financial insecurity due to lack of adequate care. I have no idea what your situation is, but I imagine there's a huge cost of living difference between there and many other places in the nation. The more schools and medical facilities, the more options, the higher price of living. I agree with you that it's very necessary, and I understand your mindset about doing whatever it takes because I have the same.
Other people have moved for this very same reason, and I hope they respond to you. I've seen a few of these posts, maybe even do a subreddit search for people relocating for services., We're from Los Angeles area CA and live there, but for 2 years of the pandemic we were in Kansas City, MO. My husband is an occupational therapist and advanced in his career which brought us back to our home state. Fast forward 2 years, he hired an OT who wanted to switch from pediatrics to adults. She came from the KC area. We've spoken to her about our struggles with services for our son. She told us that during her career as a peds OT, the best place she ever saw for kids services was Overland Park, Kansas which is on the Kansas side of the Kansas City divide. I can't say a single bad word about our time in KC even though it's been in the news for some problems lately. Every city has their problems, KC is no exception but I can honestly say it was the first place I ever lived where I felt a swell of pride telling people I lived there. Their new soccer stadium raises the bar for inclusivity and I definitely think you should give it consideration., I’m from MS and while we lived there they just wanted to say our son had a speech delay at 2.5yrs. I have other autistic family members and it was obvious he was autistic from his first birthday. My husband re-enlisted for insurance and within a few months of being at our new location abroad, our son was diagnosed with level 3 autism, speech delay, and global developmental delay. At almost 3 he was completely non-verbal but had vocal stems. The military moved us on companionate re-assignment to San Diego for services. There is so much more to offer here compared to what I’ve seen in MS. We get 20 hours of ABA a week (starting 40 hour weeks in a month), parent training sessions, respite care, speech therapy, and on the waitlist for occupational therapy. Peds through an autism research center, developmental peds. They have eating therapies as well but luckily we don’t have any issues with food. Everyone we’ve worked with here has been so caring with him. The downside is it’s insanely expensive to live here. Moving from MS to CA without the military wouldn’t be possible for us right now. That being said, services are 10/10 in my opinion. In just a few months of being here he sings songs, gained functional words, labels things, started following some directions, started pointing for what he wants, started interacting with peers and his sibling, less tantrums, and started showing us affection.
I see on social media the struggles of parents back home and it breaks my heart that MS is so behind regarding autism services given how many kids are being diagnosed today. Every child deserves access to the services., I'm not sure where in Mississippi you are but this hasn't been my experience at all so far. If you wanna message me maybe I can try and help? Have you been to children's hospital in Jackson?, I came to these comments to praise MI 💙 Our son starts special education preschool next week and he’s almost 3. He already has an IEP with our school district. The speech and OT we have had so far were fantastic. Everyone is so supportive. The COL here is reasonable too., I love hearing this that is so amazing! I’m
So happy for you thank you for informing me!, I just need to know how/ where is best. There’s way better things in bigger areas I have to have it. For my mom to get cancer treatment we visited 6 different states before finding a spot. It’s insane…. I’ve seen YouTube videos of ppl moving due to the same
Reason…, Thanks! I’ll look into it :), I moved to a bit of a better place but still in the south. And all the south is pretty much lacking but this place she has more stuff. But the medical care is so bad. It is sad and heart breaking my friend gave her child to a place they have in Jackson they keep the kids permanently. I can’t judge but I wouldn’t because nobody is going to treat your kid like you… but that’s the only way they do it.
In Mississippi ABA and speech and OT are non existent. I want to go to California bad…, I’m
Not in Mississippi by there’s a home that keeps your kid there permanently and they never go to school if that’s what you mean., Omg the COL is so much better in Michigan too! I feel like this isn't the first time I'm hearing about Michigan being great for autistic children. I feel kind of jealous, at least after the threat of snow., ❤️ I’m
Glad to hear that sounds like another world!, It’s definitely lacking. I had a cousin who didn’t get diagnosed until teen years even though we knew. Facilities are a last resort for me, only if he got so aggressive that he was a danger to myself and his brother. I would put my life on the line for this boy and even if we didn’t have access to the services we have I’d be busting my a** to do everything I could at home. There are a lot of resources online and I’ve utilized so many practices that have helped him make progress even before starting services. You just have to do the best you can, parents know their child like no one else and we just have to do the best we can. While we lived abroad and there were no services I made a friend who was previously an ABA tech and she was so amazing interacting with my child. She’s the first friend I’ve made that doesn’t judge him/us and actually understands and empowers him. The military usually relocates families to San Diego, Washington state, Virginia Beach, Colorado, or Texas for autism service availability so you can also look into those locations., I know there are a few, parents choose to do that...those are everywhere though. My daughter has speech and is starting ot. Aba is around here but if we choose to do it it's an hour away. But it's here. It's not perfect here but I haven't had a hard time at all. Maybe it depends on the area., My daughter is so severe and her therapist wouldn’t be surprised if she had brain seizures but that’s a kind you can’t see. I’ve had her tested but you have to test them while they are having it which means you have to catch them in the act which is hard. She regresses a lot and there has to be a reason for that….
We will reach milestones and start making progress then go backwards.
She is aggressive because she can’t speak so she gets frustrated and will hit scratch and bite. She’s bitten a lot of therapist but she does well it depends on the person aswell (whoever she’s interacting with)., I want to live to San Diego so bad I have an aunt there by they are so WEIRD my dad just died and they will not talk to me it’s so odd. And I can’t make them so…, I’ve actually looked into silent seizures myself and want to rule that out at some point. They will admit them to track them over 24+ hours straight. My son will easily outgrow me bc I’m barely over 5 foot and he takes after his father and is 90th percentile. At 3 yrs he’s already over half my height. Thankfully since he’s got some words now the frustration has lessened and he’s less angry all the time. We’re working on nice hands. Any time my son gets sick or isn’t feeling well he will regress a little and it’s so hard to see. I’m so sorry you’re dealing with this. It isn’t for the weak., They were supposed to do that and completely dropped the ball on that and sent us home after traveling hours and even lost test results. But thanks it’s
Hard for everyone with living in certain areas and even then it’s still more difficult than the average parent. I’m glad to hear he’s started talking more that’s awesome., That’s insane! I’m so sorry. Some days I’m telling myself “parenting was never supposed to be this hard” but I also believe you’re given the child you can handle. It may push you to, or even past your limits some days but in the end they’re worth it all., I’d like to believe people with lots of empathy ended up being autistic parents but that’s not always been the case mostly it has. I’ve seen like two meanies. And I think we are given what we need also. I’ve learned a lot there’s a whole world full of so many kid that are ostracized. A lot of adults are not great people…also kids are way cooler., I live in Oakland County michigan. Walled lake consolidated schools. They have had my son level 3 in preschool for free 3 days a week since he was 3 years old. Next year he starts full time kindergarten in the autism room. There are a total of 3 elementary schools in our district with special room specifically for autistic kiddos.
When we purchased our home our number one goal was a good school system and it's paying off now.
We also have this place called "the Oxford center" in whitmore lake michigan. They take a wonderful approach at therapy and holistic healing techniques.
I am not sure what the best location in the country is but I feel like we are in a great position for growth., The hardest piece of this, at least from my perspective, is affordability. If you can afford whatever, the world truly is your oyster. From what I've seen, the places that have the most resources are VHCOL. You have to be realistic about that part. Otherwise, I think Colorado is a lovely place. I live in the PNW, & while I wouldn't say things are ideal, I'm able to get a lot of things done with lots of persistence. The options exist, if you will. I did move to a larger, more expensive city for more infrastructure, & it's difficult, especially when you factor in lack of support or childcare deficits.
Childcare is a much bigger issue in some places than others; there are so many child care deserts, & it's a whole different ballgame when your child is disabled. Yes, there are programs and available funds, but the shortage of childcare workers in general means you still don't have the childcare you're eligible for, such as with respite. A huge thing people struggle with when there's a disabled child is financial insecurity due to lack of adequate care. I have no idea what your situation is, but I imagine there's a huge cost of living difference between there and many other places in the nation. The more schools and medical facilities, the more options, the higher price of living. I agree with you that it's very necessary, and I understand your mindset about doing whatever it takes because I have the same.
Other people have moved for this very same reason, and I hope they respond to you. I've seen a few of these posts, maybe even do a subreddit search for people relocating for services., We're from Los Angeles area CA and live there, but for 2 years of the pandemic we were in Kansas City, MO. My husband is an occupational therapist and advanced in his career which brought us back to our home state. Fast forward 2 years, he hired an OT who wanted to switch from pediatrics to adults. She came from the KC area. We've spoken to her about our struggles with services for our son. She told us that during her career as a peds OT, the best place she ever saw for kids services was Overland Park, Kansas which is on the Kansas side of the Kansas City divide. I can't say a single bad word about our time in KC even though it's been in the news for some problems lately. Every city has their problems, KC is no exception but I can honestly say it was the first place I ever lived where I felt a swell of pride telling people I lived there. Their new soccer stadium raises the bar for inclusivity and I definitely think you should give it consideration., I’m from MS and while we lived there they just wanted to say our son had a speech delay at 2.5yrs. I have other autistic family members and it was obvious he was autistic from his first birthday. My husband re-enlisted for insurance and within a few months of being at our new location abroad, our son was diagnosed with level 3 autism, speech delay, and global developmental delay. At almost 3 he was completely non-verbal but had vocal stems. The military moved us on companionate re-assignment to San Diego for services. There is so much more to offer here compared to what I’ve seen in MS. We get 20 hours of ABA a week (starting 40 hour weeks in a month), parent training sessions, respite care, speech therapy, and on the waitlist for occupational therapy. Peds through an autism research center, developmental peds. They have eating therapies as well but luckily we don’t have any issues with food. Everyone we’ve worked with here has been so caring with him. The downside is it’s insanely expensive to live here. Moving from MS to CA without the military wouldn’t be possible for us right now. That being said, services are 10/10 in my opinion. In just a few months of being here he sings songs, gained functional words, labels things, started following some directions, started pointing for what he wants, started interacting with peers and his sibling, less tantrums, and started showing us affection.
I see on social media the struggles of parents back home and it breaks my heart that MS is so behind regarding autism services given how many kids are being diagnosed today. Every child deserves access to the services., I'm not sure where in Mississippi you are but this hasn't been my experience at all so far. If you wanna message me maybe I can try and help? Have you been to children's hospital in Jackson?, I came to these comments to praise MI 💙 Our son starts special education preschool next week and he’s almost 3. He already has an IEP with our school district. The speech and OT we have had so far were fantastic. Everyone is so supportive. The COL here is reasonable too., I love hearing this that is so amazing! I’m
So happy for you thank you for informing me!, I just need to know how/ where is best. There’s way better things in bigger areas I have to have it. For my mom to get cancer treatment we visited 6 different states before finding a spot. It’s insane…. I’ve seen YouTube videos of ppl moving due to the same
Reason…, Thanks! I’ll look into it :), I moved to a bit of a better place but still in the south. And all the south is pretty much lacking but this place she has more stuff. But the medical care is so bad. It is sad and heart breaking my friend gave her child to a place they have in Jackson they keep the kids permanently. I can’t judge but I wouldn’t because nobody is going to treat your kid like you… but that’s the only way they do it.
In Mississippi ABA and speech and OT are non existent. I want to go to California bad…, I’m
Not in Mississippi by there’s a home that keeps your kid there permanently and they never go to school if that’s what you mean., Omg the COL is so much better in Michigan too! I feel like this isn't the first time I'm hearing about Michigan being great for autistic children. I feel kind of jealous, at least after the threat of snow., ❤️ I’m
Glad to hear that sounds like another world!, It’s definitely lacking. I had a cousin who didn’t get diagnosed until teen years even though we knew. Facilities are a last resort for me, only if he got so aggressive that he was a danger to myself and his brother. I would put my life on the line for this boy and even if we didn’t have access to the services we have I’d be busting my a** to do everything I could at home. There are a lot of resources online and I’ve utilized so many practices that have helped him make progress even before starting services. You just have to do the best you can, parents know their child like no one else and we just have to do the best we can. While we lived abroad and there were no services I made a friend who was previously an ABA tech and she was so amazing interacting with my child. She’s the first friend I’ve made that doesn’t judge him/us and actually understands and empowers him. The military usually relocates families to San Diego, Washington state, Virginia Beach, Colorado, or Texas for autism service availability so you can also look into those locations., I know there are a few, parents choose to do that...those are everywhere though. My daughter has speech and is starting ot. Aba is around here but if we choose to do it it's an hour away. But it's here. It's not perfect here but I haven't had a hard time at all. Maybe it depends on the area., My daughter is so severe and her therapist wouldn’t be surprised if she had brain seizures but that’s a kind you can’t see. I’ve had her tested but you have to test them while they are having it which means you have to catch them in the act which is hard. She regresses a lot and there has to be a reason for that….
We will reach milestones and start making progress then go backwards.
She is aggressive because she can’t speak so she gets frustrated and will hit scratch and bite. She’s bitten a lot of therapist but she does well it depends on the person aswell (whoever she’s interacting with)., I want to live to San Diego so bad I have an aunt there by they are so WEIRD my dad just died and they will not talk to me it’s so odd. And I can’t make them so…, I’ve actually looked into silent seizures myself and want to rule that out at some point. They will admit them to track them over 24+ hours straight. My son will easily outgrow me bc I’m barely over 5 foot and he takes after his father and is 90th percentile. At 3 yrs he’s already over half my height. Thankfully since he’s got some words now the frustration has lessened and he’s less angry all the time. We’re working on nice hands. Any time my son gets sick or isn’t feeling well he will regress a little and it’s so hard to see. I’m so sorry you’re dealing with this. It isn’t for the weak., They were supposed to do that and completely dropped the ball on that and sent us home after traveling hours and even lost test results. But thanks it’s
Hard for everyone with living in certain areas and even then it’s still more difficult than the average parent. I’m glad to hear he’s started talking more that’s awesome., That’s insane! I’m so sorry. Some days I’m telling myself “parenting was never supposed to be this hard” but I also believe you’re given the child you can handle. It may push you to, or even past your limits some days but in the end they’re worth it all., I’d like to believe people with lots of empathy ended up being autistic parents but that’s not always been the case mostly it has. I’ve seen like two meanies. And I think we are given what we need also. I’ve learned a lot there’s a whole world full of so many kid that are ostracized. A lot of adults are not great people…also kids are way cooler.
|
I'm at a loss and my husband thinks I'm doing it all wrong
|
Edit: Thank you all for your comments, concerns, and suggestions. I really did need all of them to look at the way things have been and change my way of thinking. It feels weird and wrong that a lot of these things being pointed out to me was not something that had crossed my mind. Other things, it just needed to be said. I appreciate all of it. We've started to read the book, "how to talk so kids will listen & listen so kids will talk" and that already has changed some things going on in the house. Today is the first day of it all getting better. My husband and I talked last night extensively about everything and we talked to our son about how things have been going lately this morning. I asked him if he would like to have his meds, we explained to him that they could help with regulating his brain, and he very much wanted them. I think that hearing T state he "wanted his brain to be his normal" was my husband's wakeup call.
As a small side note, I had been fighting with insurance for my hubby's meds to be covered for the past 4 months. Far too often these past months, he has been without meds himself. Stocking issues, insurance being a pain to deal with, no one taking the correct steps on their side of the whole ordeal, and even some crap from the Dr office. My husband can't function without his meds, and would often shout expletives or things like "My brain is broken" and "I hate my brain" etc. If that sounds familiar.... yeah. Hello kettle, I'm pot.. T is copying a lot of what Daddy is saying. For all I know, T means it just like his dad does. Husband's now feeling guilty that he put T's weight gain over his medical need for the meds.
(I know they're only 7, and can't understand most of the why's for medical know-how, but I feel it's important for them to know how to talk to medical personnel and know what is going on with them.) That aside, I still went with the plan today for G to go to a friend's house, leaving T at home with me and dad. After a few hours, I took T over and we spent only about 30 min there before coming home. (T got over stimulated really fast because it's been a while since they've played with their friend) is Been an overall good day, and we are going to keep getting better.
-Original post-
I (F, 36) am a mother to 7 yo twins. G is my girl and practically never misbehaves. T is my autistic boy (level 2/3 when he was diagnosed 3 years ago). He's been through ABA therapy, and has meds he can take but is not taking them during summer to gain weight. My husband, their father, is also autistic. We've taught the twins that normal doesn't exist and that it's okay to be different.
We have differing opinions when it comes to discipline. His parents are wonderful people and I honestly don't think they ever needed to enact discipline the way I had it. They were the parenting type of "I'm disappointed in you." and that was enough for him and his brother to stay in line. My parents did groundings and spanking if needed (rarely because once you've been middle-named, you knew a punishment was coming.) We talk to them when they're frustrated and have a no hitting/spanking policy. I admit I've slipped up on this last part in recent weeks, and when I do, I always apologize to T for doing so and explain my reasoning behind it. I don't ask forgiveness, as we've taught them they do not have to forgive just because someone says they're sorry.
Recently, T has been throwing these tantrums that include swearing at me and his sister, calling us names, saying mean things, and honestly if this was me when I was a kid, my butt would be red and I wouldn't be allowed to leave my room. He screams at me, says he doesn't want to live, that he hates it in our house, he doesn't want to play with his sister because she's annoying or isn't fun to play with.
This morning, they were playing fine and having fun. They came to me and asked for tablet time. To which I denied, wanting them to play for a little longer before they have tablets. I was only asking for 30 more minutes. But this was unacceptable and he started screaming all of the above to me. He berated me for telling them no, and that he didn't want to play with his sister. All but said he hates her. So, I told him to go take a break in his room, and I gave G about 15 min of tablet time. Of course, he blew up even more and this is where my husband thinks I'm going about this the wrong way. I offered to play a game with them, they refused. T got unnecessarily mean toward his sister who had done nothing wrong. So I let her have an escape.
I told T to go to his room, and that we would talk when he calmed down. Hubby came out of his office to see what was going on. To which, I just told my hubby that I had asked T to go to his room to calm, tried to explain what was going on, and now hubby thinks I'm favoring G by giving her what had been politely asked for 5 mins ago. After that, I contacted my girlfriend to have G go to her place for a few hours. T said he didn't want to play with her, after all. I take her over, I get back, and T feels left out because he wasn't invited. (he doesn't like to go to their house, anyway.) So I talked to him. I let him know that I was not going to let G feel unloved and be bored. He likes to play by himself all the time while she prefers to have a play mate. So I resolved the issue by taking her to a place where she would have play mates, and feel welcomed.
T comes to me and SAYS he's sorry for the things he's said and the way he acted. I told him I honestly don't want to believe him because he said the same things yesterday, the day before that, and the day before that. He doesn't mean it because he's constantly doing it. Every single day I hear, "I hate you mommy." , "you're a bad mom." , "I just want to die", "I don't want to live here any more.", I'm dumb/stupid" , "I'm a failure." "I'm useless"...... I'm not sure what to do. He needs a reality check that his negative actions effect the people he says them to. I don't want to deal with him some times, and I say to him that I need a break. Hubs feels like I'm giving up on him, that I'm treating him unfairly, that I'm setting him up to be like this some times.
I live with diagnosed chronic pain, so sitting on the floor to play with my kids is extremely hard for me. Just making lunch for them hurts me enough that I will be sitting down for at least an hour after, even though it's something like a pb&j, grapes, and some chips. It's mentally and physically exhausting to be in constant pain but I do what I can. I try not to let it effect the way I talk to the kids, and for the most part I do good on that. If I can't handle them at the time they're talking to me, I let them know to give me a minute before we chat. I'm dealing with my stuff, and then I get bombarded with hurtful words, actions, and he even hits and kicks me. I literally can't get close to him and the only time I get any contact with him is when he's laying in bed and I ask him for a goodnight kiss, to which I'm denied 60% of the time.
I don't know what to do. Yes, we've talked to his doctor recently about his behavior. We are looking into our resources provided. Any advice is welcomed. Am I in the wrong for how I acted? Is sending his sister to another house where she's welcomed and can play with kids her age? Is not inviting him even though I knew he would decline the invitation mean? She has an invite to another friends' house tomorrow, and I don't feel like telling T or my hubs about it and just taking her there. I don't feel he deserves the reward of going to a mutual friends' house (not my gf's house), but I know that my hubs is going to tell me that's going too far to punish T. I believe that T needs a reality check: If he can't be nice then he can't go. It's fine he doesn't want to play with his sister all the time and he wants breaks from her. I get it. But she likes to play with him, and I know for a fact that they have fun together. I know T is blowing smoke when he says he doesn't want to be around her. He's being an a-hole, so I'm taking G out of the equation and out of his range of hurtful words and actions.
|
So far I don't see issue with you separately your twins, and allowing your daughter to engage in normal, enriching, kid-activities that she would be more-or-less entitled to anyway. The fact that T misbehaves or needs to be separated shouldn't affect whether or not G can have her own childhood.
But look - I certainly don't know everything that's going on, but seeing that your son is spiraling into language like "I hate you mommy." , "you're a bad mom." , "I just want to die", "I don't want to live here any more.", I'm dumb/stupid" , "I'm a failure," "I'm useless," every day is something I'm concerned by. The pseudo-psychiatrist in me would flag that as a sign that the methods of discipline in your household are not achieving their intended result.
You've mentioned that you've increased the usage of corporal punishment, and although it's a chicken-or-egg debate on whether the spanking is resulting in worse behavior, or vice versa, it kind of lines up to around when you've taken him off his meds.
And if you're going to make the decision for him to go off his meds, it doesn't seem like the best time to start ramping up the rhetoric about needing a break from him and wanting to give him "reality checks." He's presumably on those meds because of his inability to self-regulate otherwise.
I certainly can't relate to how difficult it must be to have twins in this situation, so I don't mean to suggest anything should be easy about this. Good luck!, I understand wanting to get her away from the behavior. But I do not agree at all with you giving her the tablet after he asked and you said no, regardless of how he acted. It does look like you're favoring one over the other. Also I'm assuming that G is not autistic. You saying things like she is always "good" is also not cool. It's not that your son is "bad" he's autistic! Which is a lot harder for him than I think you're giving him credit for. Of course she doesn't have meltdowns she's not autistic. I just think you need to realize you thinking she's the better one is absolutely affecting him negatively. And I'm sure you have but maybe remind yourself how truly hard it is to be an autistic 7 year old and try to change your attitude with that in mind a little more., I strongly recommend The Explosive Child. You need to get it out of your head that your child is an a-hole, mean, etc. All of his behavior points to him struggling. Making a battle of it gets you nowhere., I wouldn’t make him playing with his sister a condition to earn any rewards, only take things away if he says harmful things about her. Do not make him play with his sister if he genuinely does not want to. Also I would not give her more free iPad time when that is what he wants because he will overtime resent her. I would have a jar of kindness. Every genuinely kind thing he says about himself and anyone else he gets a token. Once he gets so many tokens, he gets iPad reward time each day. Take tokens away when he says those terrible things, but first help him rephrase what he means to say, instead of “I hate mommy,” maybe it’s “I feel sad because you gave her an iPad and I wanted it.” He could get a token for that, expressing himself appropriately, but you’ll have to teach him that. Based on what you said, that’s my advice., He probably needs his meds to help regulate., I understand you’re frustrated and his behaviour sounds like it was difficult to deal with. It’s not wrong to be upset about this or be frustrated.
But honestly I feel if I were in T’s place that I would believe you love his twin much more than him.
As an autistic adult a lot of us have really low self esteem and depression, and a large part of this is that autism is often framed really negatively. I often silently feared that my parents loved my siblings more than me because I sat in offices with autism experts and they were often talking loudly about how hard I could make their lives or how hard my life would be. I feel like having way different rules for my other siblings (my parents didn’t really do that) would make me feel really depressed if I was a kid because that confirms my worst fears as above.
Parenting is really hard work and if you don’t have autism it’s really to understand how autistic people operate; it’s very alien to non-autistic people and that all being said I still totally understand that.
I also think the fact he says he wants to die all the time and that he hates people is really alarming and you should take him back to his therapist, doctors, whatever ASAP. Children and teenagers can have depression and I honestly feel he might also be depressed. Autism and depression are co morbidities. My eldest sister has depression from a young age and she said stuff just like this. Sometimes depressed people are very angry particularly depressed men and boys., "My child keeps telling me he hates me no matter how hard I hit him, what should I do???"
Jesus christ stop hitting your child, I definitely would not have given your daughter the tablet after telling your son no when he asked. What I would have done, is asked the son to go to his room to calm down, and then I would have played with the daughter myself.
You have to try and see things from your sons perspective. You told him no, he got upset, he got sent to his room and then his sister got exactly what he was asking for. Imagine how that felt for him to witness.
I totally get that your son prefers to play alone, my son is exactly the same. He has two older brothers and he will play with them sometimes, but usually he just wants to do his own thing. I would encourage you to allow your son to do that and stop trying to force him to play with his sister. Give your daughter things she can do independently, or things that you and her can do together instead when your son doesn’t want to play with her. You would get frustrated too if you were forced to interact with someone when all you wanted was to be left alone for a bit. I would stop resorting to taking your daughter on play dates when her brother doesn’t want to play with her, because once again, how do you think that looks from your sons point of view? You said it yourself, he felt left out. He sees it as a form of punishment. “I didn’t want to play with my sister so she got to go somewhere fun and I didn’t.”
Also, your son is coming off medication AND dealing with summer break, which I assume means a totally different routine? This is a lot for an autistic child to deal with already.
And in my opinion, spanking is not an effective form of punishment with any child, but ESPECIALLY autistic children. If anything it is more likely to make them act out even more., I was never diagnosed with autism, but I remember experiencing parenting like yours and I found the parenting disorganized and chaotic. This style is actually fine for most people, but I like order, schedules, and routines similar to autistic people. Your son might do well with an iron-clad schedule including with assigned tablet time. No surprises, no discussions.
In the tablet part of your story, your son noticed a swathe of logical inconsistencies, but was unable to debate them, which must have been mental torture for him. The arbitrary 30 minute tablet fiat alone is raising my blood pressure and I'm not even affected., Did his Dr. approve skipping his meds cause it sounds like he needs it for emotional regulation., I want to add something g here that may have perhaps been overlooked. When you are neurodivergent and rely on medication, suddenly not having that medication feels like he'll. Not an exaggeration. You get very used to how calm and quit your mind can truly be on that medication, that when it is taken away, feels like a bomb of chaos went off inside your head. This honestly might explain a lot of the behaviors you are seeing.
Having been on Adderall before, I get rhe weight loss concern, but is there another weight gain method you could use beside taking away his medication? For instance. Sneaking protein powder into his dinner or drinks. My son has protein powder in his oatmeal every morning. He calls it his cookie oatmeal.
Especially with neurodivergent kids, corporal punishment doesn't work. I feel for you, I can't imagine how frustrating it must be. But maybe you could try time out, or the corner as a last resort instead., >We talk to them when they're frustrated and have a no hitting/spanking policy. I admit I've slipped up on this last part in recent weeks, and when I do, I always apologize to T for doing so and explain my reasoning behind it.
[Here](https://www.apa.org/act/resources/webinars/corporal-punishment-gershoff.pdf) is a summary of the research on spanking, which indicates spanking is linked to worse behavior, lower self-esteem, and more mental health issues
Also, I would be careful with the idea of apologizing and then explaining why you spanked. It seems as though this is a way of telling your child why it was actually a good or necessary or justified choice on your part, rather than a harmful choice that deserves an apology.
Of course, this might not leave you with good options for supporting regulation. Do you have an occupational therapist who can help support with co-regulation strategies, strategies to increase predictability, etc?, Basically he lacks the self control to engage life at the same level as his sister. Take her to her play dates for her own development. Her brother will have his own activities and they absolutely will not look the same.
It isn’t just about punishment. Use that non sibling time as development time., Can I ask what the med is?, If he asked appropriately for his screen time, I would have given it. (This is something ABA teaches.) I personally don’t put strict limits on screens for my ASD child as that really helps his sensory needs. It doesn’t mean he does it all day, but if he is asking appropriately (not grabbing it, pulling me toward it, hitting me) he can use it.
Does his ABA do parent training? We get a lot out of that!
Also don’t take his mean words personally, he is probably struggling expressing anger in a productive way. Speech has helped my kiddo a lot with this. My son is completely verbal but qualified for speech for communications, understanding emotions etc. it’s been a game changer for us. He still says mean things at times but I know he doesn’t really hate us or anything.
I don’t think spanking ever helps a NT or ND kid. Creates fear that stops the behavior. That’s about it., I have autism myself sorry what you're going through, I agree with this comment! Putting him on medication and taking him off medication “to have him gain weight” MUST have him feel a certain different way!
Did you speak to your doctor about this! Because and I’m being blunt he was on that medication purposely presumably for behavior modification… and then to boom take him off of it, and assume his behavior would remain perfect???
Next? He apologizes to you and you cut him down and say NO not good enough!!!!
How old is he?
If he apologizes you accept it at face value! No matter your chronic pain.
I HAVE chronic pain and I decided years ago I could either let the chronic pain be my excuse to be miserable or I can get over the pain and live my life bc the one thing is the pain is never going away… I chose the former.
I don’t use my chronic pain as an excuse when I play with my kids—at this point I never even talk my chronic pain anymore, so my friends don’t even know I’m in pain unless i scheduled a medical/care appt of sort to manage my pain then it can come up in an adjacent kind of way…. But I really don’t even think about my pain….. the pain is constant in a minimal humming kind of way but I don’t focus on it so it doesn’t bother me anymore most days, That's the exact reasons we talked to his Dr recently. Dr said that the meds he has wouldn't do anything about his behavior. T has them to help him focus for school, but he loses weight while taking them since they have the side effect of appetite suppressant. I haven't spanked him for a few months, and we (hubs and I) have agreed that it doesn't help very much. It definitely escalates him during the moment. I shouldn't spank him and I'm working on that. It makes me feel horrible and I always remove myself right after, though I should do it before I raise my hand.
My hubs and I talk every night about things that happened and ideas on how we can improve. T's Dr recommended a book called, "How to talk so kids will listen & listen so kids will talk". We just got it in, so we're going to read it and see what else we can improve on., So much this. Also, she took him off medication, plus it’s summer so his routine is different… so many changes for an autistic child to deal with, I’m not surprised he is acting out in these ways. We’ve been dealing with similar behavioral changes with my son, simply because it’s summer and his routine isn’t exactly the same as it is during the school year., You're correct that G is not autistic. I've never once told them that she's the good one and he's the bad one. I don't call him a bad child. Just the behavior when he's this mean to us is bad. I try to understand reasons behind how he's acting like the ABA therapy taught us. Yes, I was in the wrong for giving her some tablet time while he had his meltdown. I really try not to favor G, but I'm not going to reward T when he's throwing a tantrum or being mean. I believe that's where I fall short. I Just don't know how to handle the situation when he gets like that., I totally second this advice. Also, if you haven’t already, make a clear structure and timetable for stuff like tablet time, so it doesn’t become an argument or negotiation in a stressful situation., Oh it’ll get her somewhere …, I've never forced him to play with her. That's never a condition. They have their own tablets and can earn it by being good, not fighting, etc. Whenever he says he doesn't want to play with G, I have made it a habit to ask T if he can tell me more or why he doesn't want to play with her. We have a small conversation about it, and inevitably, I convince G that hanging out with me for a bit to give him some space is the only thing I can offer.
We tried the token thing once upon a time ago and it didn't work. But we could bring it back. Thank you for the advice., That's what I had thought. I brought it up to the Dr, but he didn't see how it would help the current situation., Omfg. I am running away from this post. Please someone drill this in, and also that meds for ADHD isn't mostly even about focus. This is too painful., This is literally not happening. I tried to ignore your response, but apparently others are thinking this as well., Yes. We had a discussion with the Dr well before school ended about T taking meds or not during the summer break. My hubs and the Dr wanted him to gain weight more than they thought about the consequences of his not being on the meds. I was against skipping for the summer because I knew this kind of thing would happen., Dexmthylphenodate., >Dr said that the meds he has wouldn't do anything about his behavior. T has them to help him focus for school
A stimulant, I assume here? Vyvanse, Ritalin, etc?
What jumped out at me in your original post is that *a lot* of what you described sounds very impulsive, like he's having trouble managing his emotions and thus his behavior, like he's saying the first thing that pops into his head.
If he takes a stimulant for school....those also help ease impulsivity. My older son (ADHD dx, his brother's the autistic one) has very similar behaviors and describes not being able to control himself if he hasn't taken his ADHD meds.
Is he better able to manage things during the school year when he's on his meds?, Maybe your should try to get another bt. The bt can teach him how to play with others and ways to work through the issues. You keep saying discipline but that may not be what he needs. Sounds like he needs to learn alternatives to how he's behaving. Also a BT and bcba can teach YOU alternatives to your reactions to his actions. The bt can help the entire family. Discipline doesn't teach. All it does is show them a power struggle. However, removal from a situation and taught how to avoid the situation does teach., A lot more aggression., He shouldn’t have to explain why he doesn’t want to play with his sister. This poor kid doesn’t really have a safe space to be alone… you said he shares a room with her, and then they’re together all day during summer break? And he has to think of a good enough reason to not want to play with his sister? If he says he doesn’t want to play with her, your response should just be “okay you don’t have to play with her, you can play alone if you want”, I'm not sure what medication your son takes to say exactly. But when my son doesn't take, or takes a lower dosage, of his ADHD meds, his temper gets very short. He gets more impulsive and can't regulate his mood easily., Any psychiatrist that knows your son and isn’t an absolute moron would not take your son off his meds for the summer. I know ADHD meds are sometimes skipped on a weekend or for a short period but that can be catastrophic for an autistic child. He is completely disregulated it sounds liked and it will take that much longer to work him back to a therapeutic state. Poor little dude. Get a new doctor and put him back on him meds ffs. They have appetite stimulation meds if his weight is that low., >We talk to them when they're frustrated and have a no hitting/spanking policy. I admit I've slipped up on this last part in recent weeks
​
>Recently, T has been throwing these tantrums that include swearing at me and his sister, calling us names, saying mean things, and honestly if this was me when I was a kid, my butt would be red and I wouldn't be allowed to leave my room.
Your own words, So he's not having his medical needs met and he's being hit? 😭😭😭, If that's the case, he deserves more patience than usual. What I've learned is that standard parenting techniques do not work with kids on the spectrum or ADHD. So the work is more on you than him. He can't control what he says, so he really doesn't mean it. You also can't control what he says when he's on a meltdown, but what you can control is your behavior. So, maybe it will help to seek some therapy for yourself too., Can I ask if it’s being used for Narcolepsy or ADHD?, Dexmethylphenodate. Yes he's a lot more well behaved during school. He does virtual school as the actual location is not an option for him any more. His sister goes to the local school. They also play nicer with each other after school since they haven't seen each other all day. Perhaps he's just getting over loaded by G's dependence on him for social activity. She's a social butterfly like I was, but there's no kids in the neighborhood their age that I feel have a safe home she can go to., That's part of the resources we were provided. Our insurance didn't cover bt because he only exhibits this behavior at home. I took him to the facility, and they saw no reason he needed their assistance. But at home, it's completely different. They dropped us from their program because of payment issues and won't take us back. (I was paying what we could afford, and apparently, that's not good enough).
Perhaps I'm using the wrong word. But discipline is not just using punishment for disobedience. It's a way of teaching the quality of your actions and behavior. It doesn't have to include punishment. T likes to be in his (shared with his twin sister) room, and it's a safe place for him to calm down. So, when he starts to yell, I ask him to take some time in there so we can talk when he's more calm. Sometimes it takes him an hour, sometimes it takes 5 min., I ask him because sometimes there's a reason. Not just that he doesn't want to play with her, but something like they want to play different games, someone used a Lego the other wanted, etc. I've never once told him that his reason wasn't good enough and tried to force the issue., Yeah. MY butt would be red. That does not mean I'm spanking him for every incident. The last time I remember spanking him was a week or two before our family road trip, which was sometime in July., No on the hitting. That was months ago and I'm not going to do it again., His adhd and autism., It's possible they're getting sick of each other, yes. We're at that point too lol.
But I think it's worth considering that your son really cannot control what's happening. The Focalin seems to help with impulsivity and the resultant irritability during the school year; that lines up with what I see with my child. What you've described is *so much* like my boy at age 6 (he's 11 now) and being unmedicated is so hard on him that, at his request, he takes his Vyvanse daily, not just for school.
I know the lack of appetite thing sucks. My son gets as much calorie-dense food in as he can before he takes his meds, I have an open kitchen policy so he can grab snacks throughout the day & night, and when needed I'll give him Carnation in milk or in a milkshake. Also, because of the nature of ADHD, I remind him to eat at regular intervals. If you're able to adjust how food works in your house it may be worth considering whether your son needs such a long meds break if doing so is having an overall negative effect.
It doesn't sound like he enjoys experiencing these behaviors any more than you do.
I also wanted to touch on your son repeatedly saying he wants to die. This is also something I've experienced with my autistic son and it's a nightmare, isn't it?
Please get him into some play therapy for this. I know you probably have more therapy than you thought possible on your plate but your boy is telling you he's hurting. In our case the school brought in a psychotherapist to see him weekly in the school setting. It was very helpful for him.
If you're doing virtual through your school district they should have someone either on staff or contracted who may be able to meet with him virtually. If you're doing K12 I know they have excellent counseling services, at least in our state., My kid doesn't even have a chance to make good choices unless I medicate him. I have decreased his meds for the summer (and significantly decreased them due to weight loss... We were able to go down a lot with success at school), but bottom line is his quality of life is actual hell without meds. I have ADHD too, and it's not about FoCuS. It makes me sick that a doctor still thinks this. It has so much more to do with the actual things your son is struggling with. Maybe these meds are too strong for him, I don't know, but I would be setting my son up for complete failure without them. I was set up for failure as a child in the exact same way because I didn't get diagnosed., But asking him “why?” every single time probably makes him feel that way. Like he has to explain himself instead of just getting alone time when he wants it. When my son gets upset over little things like what you listed, sometimes all he needs is a few minutes alone and then he’s totally fine. But if I intervene and ask “what’s wrong” or “why don’t you want to play anymore” it typically upsets him even more., Don't physically abuse your disabled child and don't try to rationalise it by calling it "spanking". Everyone is being very polite to you in the comments because this is a supportive community but the downvotes should tell you something. Your husband is right., You mentioned in another comment that the last time you spanked him was before a road trip in July… July was literally 2 days ago, Listen, I know how hard this is. I have gone through so many things in my life because both of my parents are toxic and unfit with substance abuse and general abuse issues so seemingly everything has been way harder than it ever needed to be. Add in that I'm autistic and have ADHD. My oldest child died when he was six months old. My middle child just turned 17. He is NT. My youngest is 6 1/2 and is disabled. I am a widow. His dad is dead. So I'm also a single mother. I'm educated. Scarily so as I think the more you know, the worse things actually are. There's quite a bit of truth to the saying, "ignorance is bliss". I have never encountered this type of hellish prison until I had my youngest. I am a prisoner. My life exists to serve him. I don't belong to myself. I don't have any support. I regret having another child more than I ever should. I really want to pack my bags and run the hell away some days. I don't have anyone to let me take a break or just step out to catch a breather. My oldest son mostly stays at his father's house because my child is really difficult to cohabitate with. He's a loud tornado with poor boundaries. He's globally delayed and wears diapers. I have cameras everywhere and cannot ever leave him unattended. Ever. It's quite literally hell so much of the time. I struggle so much because I'd much rather be with my other child 24/7, if given the choice. I have such guilt over the entire thing.
But I cannot hit him. You cannot hit your child either. It's the absolute worst thing we can do. They are not at fault for their disabilities. They also didn't ask to be born, much less experience this culture or their family dynamics. They have zero life experience and some will never be able to be independent. You cannot hit them. They need their medications that help them to regulate. Those medications aren't so they can "focus". They are so their brains will make enough dopamine so they can emotionally regulate, have actual choices, and be able to function on any type of normal level. I absolutely know how hard and tiring this is. Not medicating and hitting can't be options. It's abusive, bottom line. Your child didn't ask to be here or to be dealing with any of this. Your child does not want to be hit by the person who brought him here and should take care of him, teach him how to emotionally regulate and cope. You aren't able to emotionally regulate and cope either if you're hitting. Deal with that. Most likely, you were hit as a child too. So was I. It's hard to heal and overcome those pathways. You can do it. Don't ever allow hitting to be an option. Walk away. Take anger management if you need to, but learn to walk away and emotionally regulate yourself. You cannot expect a small child to be able to do something you can't do yourself, as an adult. Children cannot be held to adult standards-- it is our job to guide and show them how to do all of these things., Sweetheart, children with ADHD have problems with impulsivity, emotional regulation and executive functioning. The meds help him function. If you take the meds away and then punish him for the resulting behaviour, you’re essentially punishing him for his disability. Im not a Dr, but the meds absolutely help with said behaviour, why else would you be giving it to him?, That was exactly the point I made to the Dr. but he insisted that it wouldn't help. He basically told me that there's nothing for T to focus on during the day, so the stimulant wasn't necessary. I have an open kitchen policy, too. But for certain things they do need to ask. If it were up to them, they would eat the giant bag of doritos from costco for an entire meal and then they would complain about their stomachs hurting. So if it requires cutting or cooking, they need my or dad's help.
Yes, I am literally losing sleep over what he's saying. I'm already afflicted with insomnia and can't sleep without meds, so this isn't helping things.
I wish our school district had even a contractor counseling services. There just aren't any in our area. It took my gf over a year to get her eldest son into counseling, so I also know that the demand is ridiculously high.
I really appreciate you pointing things out to me and actually talking to me, rather than downvote everything I've responded to like other people are doing. I know I'm doing things wrong, but it's they way it's being done. And that's the part I'm stuck on., You need a new doctor. This doctor doesn't know jack about ADHD. Perhaps you should read a lot more into it too., First of all: no one is doing this perfectly, or even like 75% perfectly. We're all learning as we go and we all fuck up. I'm sorry you got downvoted.
I'm going to second the other commenter here - you probably do need a new doctor. Is this your son's pediatrician? Or a specialist like a developmental ped/neurologist/etc?
Most of the time regular ol' pediatricians are great for well checks and things like strep throat but kinda suck for really specialized medical issues (and this *is* a medical issue!!) like ASD with comorbid ADHD in a ~~6~~ 7 year old. I trust our pediatrician implicitly and honestly think he's the best doctor in the world but both he and I know he's not the person to manage my 9 year old's Crohn's disease or kidney disease or autism. We have specialists for those things.
It sounds like you need a specialist - or a different specialist - for your boy's ASD/ADHD meds. It's a complicated issue.
It's frankly bullshit that a child not in school has no need to focus, or nothing to focus on. That statement is provably false. Just living life requires the ability to focus, and the ability to regulate one's impulses. To me it sounds like the doctor doesn't have even remotely current knowledge about ADHD itself let alone how it intersects with autism.
School is starting soon which means he'll "have something to focus on" 🙄 again, and hopefully everyone will get some relief.
During that time I would recommend you focus on finding a doctor with better knowledge of your son's conditions and get on those waitlists.
You can dial 988 if your boy expresses ideation again; they may be able to fast track him into therapy.
If your school district is shitty - and I get the impression that it may very well be - take a look at K12.com for your state.
https://www.k12.com/washington-online-schools/
No affiliation, but my 11 year old has been virtual with K12.com since kindergarten. It works really well for us, and it was miles better than the virtual program my local public school district (which is *excellent*, and my 9 year old attends) had during covid. They have a lot of autistic students & provide supports.
Most importantly -
please remind yourself that your son physically cannot help a lot of what's happening. His brain simply doesn't work that way and he's only ~~6~~ 7. Any ~~6~~ 7 year old struggles with this shit but it's so much harder for ND kids.
Talk to him. Explain that you know he's having trouble expressing himself or controlling what his body is doing. Sit with him and demonstrate calming breaths. Give names to his emotions, demonstrate how you deal with it when you have those emotions. Tell him you love him no matter what.
And, possibly unpopular opinion here, but.... ease up on the screen time restrictions. For some AuADHD kids screen time is actually helpful to regulate their demanding brains and if you guide him towards beneficial activities like educational games, Daniel Tiger type videos, etc he may learn some things along the way. Both of my boys did.
EDIT: sorry, I had it in my head that your kids were 6, not 7. Corrected., Is your doctor well versed in special needs children or is it your pediatrician?
|
I'm getting assessed for autism but what about my kids?
|
Hey everyone, advice needed please. I'm 49 and recently discovered I have significant autistic traits through an autism test l did for a course I'm studying. It makes a lot of sense to me and I'm looking into it, reading a lot, have done more tests and been put forward for an assessment by my doctor, had occupational health input at work etc.
I have long thought that my kids (12m and 14m) may have traits. My older kid is immune to peer pressure and got an award at primary school for "always being himself no matter the situation". His teacher described him as "a very unual child" and she meant it as a compliment. He is very risk averse and likes things "just so". If he gets upset he demonstrates a "shut down".
My younger kid has more ADHD traits, he blows up if he has feelings he can't handle or if things change. He finds it really hard to keep still and has a super short attention span and trouble organising himself. Is always losing stuff.
I suggested my younger child get assessed to the school when he was 10 as he found lockdown really hard and would hide under his desk and get really overwhelmed. The school told me at that time it wasn't affecting him academically so it was not worth bothering.
We are a couple of years down the road now and with my own assesment pending I'm wondering how I approach this with my kids. I'm a single parent and my ex husband is really hard to deal with, he would probably be very resistant to me trying to label his kids "disabled". They are both at high school now and are doing well academically and it doesn't seem to affect them too much socially although of course I don't know how much they are hiding/masking as I have done that my whole life.
I have recently been experiencing burnout type symptoms and don't want my kids to have to grow up oblivious to this side of themselves like I did, if it is who they are.
What can I do?
|
I would get assessed as well as your kids, it will make things a lot easier for everyone if you actually know if you are on the spectrum.
I wouldn’t think you need permission of the children’s father to have them assessed, if they live with you?, Have you told them about your own evaluation? You could start there. I’d come at it from a positive lense explaining that Autism is not wrong, it’s just your brain working in a different way and it’s highly genetic. While not guaranteed, there is a higher likelihood of them also being Autistic so you want to offer them an opportunity to get an evaluation as well., Your kids sound like my son (15, ASD L1) and my daughter (10, Severe ADHD) I’m probably undiagnosed. I’m not sure what advice I can give because my partner was 100% on board with having neuropsych evaluations done., Thanks for the reply. Yeah I'm definitely getting assessed but I'm not sure how to approach my kids about them getting assessed? They're at a tricky age and I don't want them to think I'm trying to label them. At the same time it might be a good thing if we all know for sure? I share custody with my ex so he has them 3 days a week, That's a great way of putting it thank you. I want them to make the decision for themselves if possible., How long did it take for your kids to get assessed? Was it done through school?, From what we’ve witnessed it’s only been positive things from having an assessment, both for adults and kids.
For example accommodations that will be made for sensory breaks at school, exams and help with studies.
Going forward you can recieve a lot of help, both in terms of how to deal with your sensory needs and also financial to enable you to buy the things you needs calmer, happier life.
Our family are all autists and we now are in a position to not have to deal with anyone we do t need to do we can have a life of our own choosing (I’ve now retired at the age of 52), From what we’ve witnessed it’s only been positive things from having an assessment, both for adults and kids.
For example accommodations that will be made for sensory breaks at school, exams and help with studies.
Going forward you can recieve a lot of help, both in terms of how to deal with your sensory needs and also financial to enable you to buy the things you needs calmer, happier life.
Our family are all autists and we now are in a position to not have to deal with anyone we do t need to do we can have a life of our own choosing (I’ve now retired at the age of 52), From what we’ve witnessed it’s only been positive things from having an assessment, both for adults and kids.
For example accommodations that will be made for sensory breaks at school, exams and help with studies.
Going forward you can recieve a lot of help, both in terms of how to deal with your sensory needs and also financial to enable you to buy the things you needs calmer, happier life.
Our family are all autists and we now are in a position to not have to deal with anyone we do t need to do we can have a life of our own choosing (I’ve now retired at the age of 52), From what we’ve witnessed it’s only been positive things from having an assessment, both for adults and kids.
For example accommodations that will be made for sensory breaks at school, exams and help with studies.
Going forward you can recieve a lot of help, both in terms of how to deal with your sensory needs and also financial to enable you to buy the things you needs calmer, happier life.
Our family are all autists and we now are in a position to not have to deal with anyone we do t need to do we can have a life of our own choosing (I’ve now retired at the age of 52), It didn’t take long once we realized something was going on. But we had my son assessed privately through a neuropsychologist and same with my daughter. My son came to me one night with suicidal ideation when he was 5. We saw a psychologist right away. Then privately paid for the neuropsych eval a few months later. My daughter was struggling in school but the school didn’t really let us know how much. When the pandemic shut down happened, I could see how much she was struggling at home. So that led to another private neuropsychological evaluation for her., Good to hear you've had positive experiences and I think breaks for exams etc would be super helpful for the kids, Wow that's so interesting. My eldest told me once we would be better off without him when he was about 8 or 9 so I took that to the doctor and they concluded it was just the one time so he didn't need further input and I should just keep an eye on it. I didn't realise that it might indicate autism struggles. Unfortunately I'm a single parent on a low wage so a private evaluation isn't an option for me. Thank you for sharing, I appreciate it, It can mean the difference between managing to suit your exams and not even being able to get into school to take them.
It’s all well and good to not want to be labelled but when things are getting difficult why on earth would you not want the help
|
I'm new to this site.
|
I want to send this as a test.
Please respond if this goes through
|
it went through, yo, welcome, Thanks., Welcome, hello
|
IEP meeting coming up
|
Hello, just wondering if anyone here has experience getting an aide for your child. My son is in 4th grade and we were able to get the school to provide extra support in the class due to safety concerns. My son was suddenly diagnosed with epilepsy last year and his seizures are not controlled. My husband and I went to the district and they told us they didn’t need to hire anyone since the school had enough staff to provide extra support for my son. So far we have been very happy.
My sons IEP is coming up in 2 months and I would like to have the same aide stay with him for 5th grade. Does anyone have experience on how to ensure this happens?
|
If the aide is a paraprofessional assigned to a particular classroom you probably won't be able to get her to move, as that would be a personnel issue. I was a para and my assignment was my right, meaning I agreed to it and it was guaranteed by my union for that school year.
If he needs this type of support due to his uncontrolled seizures, you could ask for a nurse. Your child's doctor should be able to prescribe that. Nurses would be better for epilepsy than para's anyways., If the aide is a paraprofessional assigned to a particular classroom you probably won't be able to get her to move, as that would be a personnel issue. I was a para and my assignment was my right, meaning I agreed to it and it was guaranteed by my union for that school year.
If he needs this type of support due to his uncontrolled seizures, you could ask for a nurse. Your child's doctor should be able to prescribe that. Nurses would be better for epilepsy than para's anyways., If the aide is a paraprofessional assigned to a particular classroom you probably won't be able to get her to move, as that would be a personnel issue. I was a para and my assignment was my right, meaning I agreed to it and it was guaranteed by my union for that school year.
If he needs this type of support due to his uncontrolled seizures, you could ask for a nurse. Your child's doctor should be able to prescribe that. Nurses would be better for epilepsy than para's anyways., If the aide is a paraprofessional assigned to a particular classroom you probably won't be able to get her to move, as that would be a personnel issue. I was a para and my assignment was my right, meaning I agreed to it and it was guaranteed by my union for that school year.
If he needs this type of support due to his uncontrolled seizures, you could ask for a nurse. Your child's doctor should be able to prescribe that. Nurses would be better for epilepsy than para's anyways.
|
Ideas for playing outside?
|
Here lately since the weather has gotten nicer, I would like to bring my son out to play with his brothers outside. But once he’s out he likes to run, sometimes in the road, and most times makes it difficult or tiring to have to chase down 24/7 while watching the other two, especially when alone. We live in an apartment complex so I can’t get a fence for the yard. I thought of a play yard gate, but feel it wouldn’t be much room. Does anyone have any ideas on what I can do? I just hate how he has to sit inside with me and not be able to go out as much.
|
A backpack leash has been our best friend for our 4.5 year old., Oh my gosh I can relate. I feel like a prisoner inside for years, Do you have a local tennis court you could use? Last summer we would go to the local highschool and use 1 of their tennis courts so my son could run around in a gated space, I just recently got him one, I didn’t think about using that. 🤦♀️its been a day lol, She really hated hers but we've got such a mess of a house we've lost it anyways, Not really any on hand that we could use. We have one or two at a park, but there’s always someone using them when we get there., We are lucky to live where there’s about zero traffic and we have a lot of yard but at the park/town/zoo/wherever else it’s an absolute lifesaver., We use ours when going to therapy, he seems to like it and not throw too much a fuss. I haven’t thought to use it out in front yard. We don’t have too much yard and when he goes out he runs straight to the car/road thinking it’s time to go play at therapy., Maybe try explaining he’s wearing it to go outside. My daughter asks for “PACK PACK ON!” now when we go somewhere and are getting out because she associates it with being able to run around. Before getting it we relied heavily on the stroller because she also liked to bolt., Okay, I will definitely try this tomorrow. Thanks for the advice 😊, Hope it works out well for you guys! It has been soo pretty out lately., A backpack leash has been our best friend for our 4.5 year old., Oh my gosh I can relate. I feel like a prisoner inside for years, Do you have a local tennis court you could use? Last summer we would go to the local highschool and use 1 of their tennis courts so my son could run around in a gated space, I just recently got him one, I didn’t think about using that. 🤦♀️its been a day lol, She really hated hers but we've got such a mess of a house we've lost it anyways, Not really any on hand that we could use. We have one or two at a park, but there’s always someone using them when we get there., We are lucky to live where there’s about zero traffic and we have a lot of yard but at the park/town/zoo/wherever else it’s an absolute lifesaver., We use ours when going to therapy, he seems to like it and not throw too much a fuss. I haven’t thought to use it out in front yard. We don’t have too much yard and when he goes out he runs straight to the car/road thinking it’s time to go play at therapy., Maybe try explaining he’s wearing it to go outside. My daughter asks for “PACK PACK ON!” now when we go somewhere and are getting out because she associates it with being able to run around. Before getting it we relied heavily on the stroller because she also liked to bolt., Okay, I will definitely try this tomorrow. Thanks for the advice 😊, Hope it works out well for you guys! It has been soo pretty out lately., A backpack leash has been our best friend for our 4.5 year old., Oh my gosh I can relate. I feel like a prisoner inside for years, Do you have a local tennis court you could use? Last summer we would go to the local highschool and use 1 of their tennis courts so my son could run around in a gated space, I just recently got him one, I didn’t think about using that. 🤦♀️its been a day lol, She really hated hers but we've got such a mess of a house we've lost it anyways, Not really any on hand that we could use. We have one or two at a park, but there’s always someone using them when we get there., We are lucky to live where there’s about zero traffic and we have a lot of yard but at the park/town/zoo/wherever else it’s an absolute lifesaver., We use ours when going to therapy, he seems to like it and not throw too much a fuss. I haven’t thought to use it out in front yard. We don’t have too much yard and when he goes out he runs straight to the car/road thinking it’s time to go play at therapy., Maybe try explaining he’s wearing it to go outside. My daughter asks for “PACK PACK ON!” now when we go somewhere and are getting out because she associates it with being able to run around. Before getting it we relied heavily on the stroller because she also liked to bolt., Okay, I will definitely try this tomorrow. Thanks for the advice 😊, Hope it works out well for you guys! It has been soo pretty out lately., A backpack leash has been our best friend for our 4.5 year old., Oh my gosh I can relate. I feel like a prisoner inside for years, Do you have a local tennis court you could use? Last summer we would go to the local highschool and use 1 of their tennis courts so my son could run around in a gated space, I just recently got him one, I didn’t think about using that. 🤦♀️its been a day lol, She really hated hers but we've got such a mess of a house we've lost it anyways, Not really any on hand that we could use. We have one or two at a park, but there’s always someone using them when we get there., We are lucky to live where there’s about zero traffic and we have a lot of yard but at the park/town/zoo/wherever else it’s an absolute lifesaver., We use ours when going to therapy, he seems to like it and not throw too much a fuss. I haven’t thought to use it out in front yard. We don’t have too much yard and when he goes out he runs straight to the car/road thinking it’s time to go play at therapy., Maybe try explaining he’s wearing it to go outside. My daughter asks for “PACK PACK ON!” now when we go somewhere and are getting out because she associates it with being able to run around. Before getting it we relied heavily on the stroller because she also liked to bolt., Okay, I will definitely try this tomorrow. Thanks for the advice 😊, Hope it works out well for you guys! It has been soo pretty out lately.
|
Idk what to think. Does my son have ASD?
|
My son is 13 months . He doesn’t speak. He babbles a fair amount imo. I sometimes catch him staring intently at my mouth while I speak. It’s as if he’s trying to understand now to say things. I think he’s trying. I guess that’s subjective. He points to things he wants or places he wants to go. He will play ball and peek a boo. He doesnt wave or clap. He will sometimes copy us if we wave and say hi or bye. But he won’t do it on his own in context. He doesn’t really understand it. Same with no. If we say no he will shake his head no but he’s not actually saying no. There seems to be a disconnect. He’s engaged with us and likes human interaction. He has a strong interest in wheels. We have to stop and let him play with shopping carts when we’re out. He also hardly eats, he’s so damn picky. Does he have ASD? Baby navigator said he was at risk. I’m worried. He’s in an early intervention already due to my own self referral. Our liaison told us to take the baby navigator assessment with a grain of salt. Idk why to think
|
Go for the assessment, but I just wanna say, your kid sounds awesome whether they're ASD or not. Try to look at it at getting the opportunity to understand your amazing little human better, as opposed to getting this big bad scary diagnosis. My kid is 3, diagnosed at 2, and she's great. We use the resources available to us to help her learn the skills at daycare, and we take classes to help learn how to teach her at home, and she's doing amazing, we thought she was never going to talk and she's picking up new words every day. She's ASD, but she's also incredible! The two aren't mutually exclusive! Getting an assessment and diagnosis is just to help you understand how to embrace and support them. They're still going to be the awesome human that they are whether they are ASD or not. :)
|
Im kind of worried for my little brother
|
So I'm not a parent but I thought this subreddit would help. I'm 14 and my little brother is 8, recently he's been having a lot of outbursts, especially since my little sister often aggravates him. He also gets really upset over random things and it's hard to communicate with him cause whenever I try to calm him down (Like telling him to take a deep breath or relax) he just ends up taking it the wrong way. He sometimes gets argessive too and also cusses sometimes. I kind of feel like his behavior has gotten worse over the years. He's also an iPad kid and repeats things he watches on that ipad. My family doesn't really check what he's watching, he does often watch a lot of those "calliou gets grounded" videos which I feel like is the reason he kind of is more argessive ? Since he screams and whenever he gets mad at someone(mostly my sister) he tells her she's grounded. Speaking of the things he says, he often just say random sentences, usually just things he hears on his IPad or when he's watching TV. He can formulate regular sentences sometimes. I feel like he's just gonna be having these negative reactions when he's older and might start having meltdowns in school and getting aggressive with the people around him. He's done it before, like had meltdowns in public or that time where he attacked my friend but that was when he was like 3 or 4. I just want some advice on ways to calm him down or teach him better behaviors cause I tried talking to him about it but he doesn't like listening. My parents have a more rougher way of getting my little brother to stop sreaming and having outbursts and I don't think it would be healthy to do. They don't like beat him or anything but they do kinda hold him back from like destroying things and covering his mouth. I'd really appreciate some advice please and thank you for reading!
|
Sounds a lot like my son a few mi the ago. We spent a lot of time helping him learn to control his anger and we still have flair ups. He’s been suspended twice this year. Since he’s turned 9 he’s done much better. We have worked with his Occupational therapist and play therapist to really get him to work on his calming skills. Honestly I don’t think any of them have really worked. What has worked is teaching him to go to his room and calm down. Once he’s calmed down then we can talk about what happened (sometimes). We have also used behaviour journaling (at the end of the day he writes down three things he did that were bad and three things that were good. It gets him to recognise his behaviours), and an anger thermometer with calming techniques (none of which we could ever get him to do.) When he turned 9 it was seriously like a switch flipped. We still have anger issues but he’s gotten so much better at them.
He spent a lot of time doing what’s called masking. He acts the way he’s told because he knows it’s what people expect. It wears him out and so on Fridays he gets two hours of minimal rules (he has to be nice and he has to stay on our block) and it gives him some time to just be himself where he doesn’t have to mask. And even by be nice we just mean he can’t hit his sister.
As far as the iPad goes, we have minimised my son’s tablet and video game time down to a maximum of 2 hours a day because he doesn’t give it up easily.When he starts playing we set a timer for an hour and when the timer goes off he knows it’s time to put the tablet or switch away. It took time but he learned it and now does it with minimal issues. It just takes time to learn new rules.
The rest of the stuff seems like just autistic traits that he may or may not grow out of.
I don’t know if this helps but I hope it does., Sounds a lot like my son a few mi the ago. We spent a lot of time helping him learn to control his anger and we still have flair ups. He’s been suspended twice this year. Since he’s turned 9 he’s done much better. We have worked with his Occupational therapist and play therapist to really get him to work on his calming skills. Honestly I don’t think any of them have really worked. What has worked is teaching him to go to his room and calm down. Once he’s calmed down then we can talk about what happened (sometimes). We have also used behaviour journaling (at the end of the day he writes down three things he did that were bad and three things that were good. It gets him to recognise his behaviours), and an anger thermometer with calming techniques (none of which we could ever get him to do.) When he turned 9 it was seriously like a switch flipped. We still have anger issues but he’s gotten so much better at them.
He spent a lot of time doing what’s called masking. He acts the way he’s told because he knows it’s what people expect. It wears him out and so on Fridays he gets two hours of minimal rules (he has to be nice and he has to stay on our block) and it gives him some time to just be himself where he doesn’t have to mask. And even by be nice we just mean he can’t hit his sister.
As far as the iPad goes, we have minimised my son’s tablet and video game time down to a maximum of 2 hours a day because he doesn’t give it up easily.When he starts playing we set a timer for an hour and when the timer goes off he knows it’s time to put the tablet or switch away. It took time but he learned it and now does it with minimal issues. It just takes time to learn new rules.
The rest of the stuff seems like just autistic traits that he may or may not grow out of.
I don’t know if this helps but I hope it does., Sounds a lot like my son a few mi the ago. We spent a lot of time helping him learn to control his anger and we still have flair ups. He’s been suspended twice this year. Since he’s turned 9 he’s done much better. We have worked with his Occupational therapist and play therapist to really get him to work on his calming skills. Honestly I don’t think any of them have really worked. What has worked is teaching him to go to his room and calm down. Once he’s calmed down then we can talk about what happened (sometimes). We have also used behaviour journaling (at the end of the day he writes down three things he did that were bad and three things that were good. It gets him to recognise his behaviours), and an anger thermometer with calming techniques (none of which we could ever get him to do.) When he turned 9 it was seriously like a switch flipped. We still have anger issues but he’s gotten so much better at them.
He spent a lot of time doing what’s called masking. He acts the way he’s told because he knows it’s what people expect. It wears him out and so on Fridays he gets two hours of minimal rules (he has to be nice and he has to stay on our block) and it gives him some time to just be himself where he doesn’t have to mask. And even by be nice we just mean he can’t hit his sister.
As far as the iPad goes, we have minimised my son’s tablet and video game time down to a maximum of 2 hours a day because he doesn’t give it up easily.When he starts playing we set a timer for an hour and when the timer goes off he knows it’s time to put the tablet or switch away. It took time but he learned it and now does it with minimal issues. It just takes time to learn new rules.
The rest of the stuff seems like just autistic traits that he may or may not grow out of.
I don’t know if this helps but I hope it does., Sounds a lot like my son a few mi the ago. We spent a lot of time helping him learn to control his anger and we still have flair ups. He’s been suspended twice this year. Since he’s turned 9 he’s done much better. We have worked with his Occupational therapist and play therapist to really get him to work on his calming skills. Honestly I don’t think any of them have really worked. What has worked is teaching him to go to his room and calm down. Once he’s calmed down then we can talk about what happened (sometimes). We have also used behaviour journaling (at the end of the day he writes down three things he did that were bad and three things that were good. It gets him to recognise his behaviours), and an anger thermometer with calming techniques (none of which we could ever get him to do.) When he turned 9 it was seriously like a switch flipped. We still have anger issues but he’s gotten so much better at them.
He spent a lot of time doing what’s called masking. He acts the way he’s told because he knows it’s what people expect. It wears him out and so on Fridays he gets two hours of minimal rules (he has to be nice and he has to stay on our block) and it gives him some time to just be himself where he doesn’t have to mask. And even by be nice we just mean he can’t hit his sister.
As far as the iPad goes, we have minimised my son’s tablet and video game time down to a maximum of 2 hours a day because he doesn’t give it up easily.When he starts playing we set a timer for an hour and when the timer goes off he knows it’s time to put the tablet or switch away. It took time but he learned it and now does it with minimal issues. It just takes time to learn new rules.
The rest of the stuff seems like just autistic traits that he may or may not grow out of.
I don’t know if this helps but I hope it does.
|
Imitating sounds/other kids
|
ASD level 1, newly diagnosed 3 year old.
When we go out somewhere and there are other families or school groups, my child feels compelled to repeat what they say and has a hard time accepting that it’s not appropriate to just randomly follow/imitate or try to join them.
Especially involves repeating loud sounds or phrases.
It gets on my nerves, but I don’t want to make my kid feel bad about themselves by expressing that. I try explaining what is appropriate/expected, but it tends to continue (and gets worse if they’re more tired/cranky.)
How does one approach these behaviours?
|
My 4.5yo would do this when he first became interested in other kids. I think it was his way of trying to relate and make friends. It was hard because I missed seeing him just be himself. It was also hard to see him get rejected at times, but there were so many kind kids we encountered as well.
I think through social experiences in his gen-ed prek class and at local playgrounds, he learned to tone it down. We also did a lot of role playing social interactions at home with his toy cars. He was really happy to be able to act out making friends and playing together.
He learned a lot through watching his peers and imitation. He learned how to follow along with the class and follow routines. His speech improved. He learned how to play social games like chase and hide and seek. It really has been a great thing!, She’s in a preschool now and has good habits there I think, but we’re on a school break right now so it’s hard., I totally understand. I think it helps to just keep going to different community settings like stores, library, and playground. Talk about and practice rules of each setting. For example inside voice and staying close to family in stores vs outside voice and making friends at the playground. That may not decrease the copying, but it might help if it’s in a quieter voice.
Also if she tries to join/follow kids at the playground who aren’t receptive, it’s a great time to gently explain that not everyone will want to play or be friends., Usually the kids are oblivious to her attempts whatsoever, which I think adds to her frustration.
Yeah, I guess maybe I need to start giving her pep talks before outings to remind her., My 4.5yo would do this when he first became interested in other kids. I think it was his way of trying to relate and make friends. It was hard because I missed seeing him just be himself. It was also hard to see him get rejected at times, but there were so many kind kids we encountered as well.
I think through social experiences in his gen-ed prek class and at local playgrounds, he learned to tone it down. We also did a lot of role playing social interactions at home with his toy cars. He was really happy to be able to act out making friends and playing together.
He learned a lot through watching his peers and imitation. He learned how to follow along with the class and follow routines. His speech improved. He learned how to play social games like chase and hide and seek. It really has been a great thing!, She’s in a preschool now and has good habits there I think, but we’re on a school break right now so it’s hard., I totally understand. I think it helps to just keep going to different community settings like stores, library, and playground. Talk about and practice rules of each setting. For example inside voice and staying close to family in stores vs outside voice and making friends at the playground. That may not decrease the copying, but it might help if it’s in a quieter voice.
Also if she tries to join/follow kids at the playground who aren’t receptive, it’s a great time to gently explain that not everyone will want to play or be friends., Usually the kids are oblivious to her attempts whatsoever, which I think adds to her frustration.
Yeah, I guess maybe I need to start giving her pep talks before outings to remind her., My 4.5yo would do this when he first became interested in other kids. I think it was his way of trying to relate and make friends. It was hard because I missed seeing him just be himself. It was also hard to see him get rejected at times, but there were so many kind kids we encountered as well.
I think through social experiences in his gen-ed prek class and at local playgrounds, he learned to tone it down. We also did a lot of role playing social interactions at home with his toy cars. He was really happy to be able to act out making friends and playing together.
He learned a lot through watching his peers and imitation. He learned how to follow along with the class and follow routines. His speech improved. He learned how to play social games like chase and hide and seek. It really has been a great thing!, She’s in a preschool now and has good habits there I think, but we’re on a school break right now so it’s hard., I totally understand. I think it helps to just keep going to different community settings like stores, library, and playground. Talk about and practice rules of each setting. For example inside voice and staying close to family in stores vs outside voice and making friends at the playground. That may not decrease the copying, but it might help if it’s in a quieter voice.
Also if she tries to join/follow kids at the playground who aren’t receptive, it’s a great time to gently explain that not everyone will want to play or be friends., Usually the kids are oblivious to her attempts whatsoever, which I think adds to her frustration.
Yeah, I guess maybe I need to start giving her pep talks before outings to remind her., My 4.5yo would do this when he first became interested in other kids. I think it was his way of trying to relate and make friends. It was hard because I missed seeing him just be himself. It was also hard to see him get rejected at times, but there were so many kind kids we encountered as well.
I think through social experiences in his gen-ed prek class and at local playgrounds, he learned to tone it down. We also did a lot of role playing social interactions at home with his toy cars. He was really happy to be able to act out making friends and playing together.
He learned a lot through watching his peers and imitation. He learned how to follow along with the class and follow routines. His speech improved. He learned how to play social games like chase and hide and seek. It really has been a great thing!, She’s in a preschool now and has good habits there I think, but we’re on a school break right now so it’s hard., I totally understand. I think it helps to just keep going to different community settings like stores, library, and playground. Talk about and practice rules of each setting. For example inside voice and staying close to family in stores vs outside voice and making friends at the playground. That may not decrease the copying, but it might help if it’s in a quieter voice.
Also if she tries to join/follow kids at the playground who aren’t receptive, it’s a great time to gently explain that not everyone will want to play or be friends., Usually the kids are oblivious to her attempts whatsoever, which I think adds to her frustration.
Yeah, I guess maybe I need to start giving her pep talks before outings to remind her.
|
Inconclusive hearing tests
|
Hello, apologies my child is not diagnosed, but I wondered if anyone can share any experience.
Basically, her newborn hearing test was inconclusive, she then had another at about 2 weeks old which was also inconclusive - on the basis that the child came out wriggling and never stopped moving!
She then had an appointment with audiology when she was between 18-24 months , they played a series of tones at various frequencies, my daughter reacted slightly to the first and ignored the rest. The audiologist was concerned at this and I explained that I am certain she CAN hear but is generally unresponsive, ignorant is the best way I can think to describe it.
The audiologist then attempted to get an echo test which my daughter did not tolerate, she managed one ear and stated she was sure the echo wasn't as good as it should be. At this point I was stressed out, so was my daughter. I again explained she can definitely hear and certainly can hear a range of volumes, including very quiet ones but she doesn't respond much generally.
We didn't get a follow up appointment and to be honest I've always been of the firm belief she simply won't tolerate the test anyway but for the most part, she can hear.
Causes for concern include, her being unresponsive or unconcerned about very loud noises at times ( drilling in the brick wall right next to her , didn't bat an eyelid)
She tugs at her ears, not a lot but often enough to take note.
She does get a lot of wax coming out her ears.
I just wondered if there is any correlation between inconclusive tests and autism or neurodiversity and also if anyone can advise how to handle her next appointment...
|
Does not necessarily point to autism, but it is one of the tests when they are looking into autism.
I would get a 2nd & 3rd opinion., Inconclusive tests mean nothing if you're looking for correlation to autism. However, you knowing that she can definitely hear but doesn't react to sounds in a typical way is absolutely related to autism. Your next step should be with early intervention (if you haven't already)., My child at this age had hearing loss. Everyone was astonished as thought that they heard and responded as though they did. So please don't assume that what you perceive as evidence of hearing means your child is hearing or is hearing at all frequencies. Like yours, we had multiple inconclusive tests at birth.
In fact, I'd think the fact these are all inconclusive tests makes pushing for a follow-up more pertinent. Did he have the test in a booth or the test where they have the toys that move with a sound so they turn? Also, don't forget they're older now, so they may respond differently, too. And if all else fails, maybe look into getting lo used to wearing headphones or ear defenders to make the test as likely to be as successful as it can be.., My son recently had a hearing test where they asked us to bring him in sleepy and administered very low dosage of chloral hydrate which made him get in a deep sleep state for about an hour - they were able to do the test and then he simply woke up like he wakes up from a nap. Maybe discuss with your doctors if this is an option for you., Thank you, it's been an absolute battle trying to get anyone to listen to be honest, she is almost 3 and her health visitor only met her 6 months ago - she was here to weigh my newborn and tick some boxes but I refused to talk to her about him until she listened to me about my girl who i had concerns about (it's not just her hearing, she has development delays in several areas, no sense of self or safety, wasn't responding to her name or anything else really, didn't engage with anyone unless she needed you to get something or be of service... frequent meltdowns. ) By that point I'd already had her referred to salt, audiology and paediatric via her GP, she had seen the paed and been to have genetic testing. So we were basically left in the lurch awaiting results and follow ups.
I had to beg for an early referral to nursery, waited months but she was given X2 2.5hr sessions a week.
This started in January this year and the nursery have been amazing, she has also been referred to the CDC who are assessing her (although I'm still not sure exactly what they do, any help is welcome)
Progress is slow but it is coming..., Does not necessarily point to autism, but it is one of the tests when they are looking into autism.
I would get a 2nd & 3rd opinion., Inconclusive tests mean nothing if you're looking for correlation to autism. However, you knowing that she can definitely hear but doesn't react to sounds in a typical way is absolutely related to autism. Your next step should be with early intervention (if you haven't already)., My child at this age had hearing loss. Everyone was astonished as thought that they heard and responded as though they did. So please don't assume that what you perceive as evidence of hearing means your child is hearing or is hearing at all frequencies. Like yours, we had multiple inconclusive tests at birth.
In fact, I'd think the fact these are all inconclusive tests makes pushing for a follow-up more pertinent. Did he have the test in a booth or the test where they have the toys that move with a sound so they turn? Also, don't forget they're older now, so they may respond differently, too. And if all else fails, maybe look into getting lo used to wearing headphones or ear defenders to make the test as likely to be as successful as it can be.., My son recently had a hearing test where they asked us to bring him in sleepy and administered very low dosage of chloral hydrate which made him get in a deep sleep state for about an hour - they were able to do the test and then he simply woke up like he wakes up from a nap. Maybe discuss with your doctors if this is an option for you., Thank you, it's been an absolute battle trying to get anyone to listen to be honest, she is almost 3 and her health visitor only met her 6 months ago - she was here to weigh my newborn and tick some boxes but I refused to talk to her about him until she listened to me about my girl who i had concerns about (it's not just her hearing, she has development delays in several areas, no sense of self or safety, wasn't responding to her name or anything else really, didn't engage with anyone unless she needed you to get something or be of service... frequent meltdowns. ) By that point I'd already had her referred to salt, audiology and paediatric via her GP, she had seen the paed and been to have genetic testing. So we were basically left in the lurch awaiting results and follow ups.
I had to beg for an early referral to nursery, waited months but she was given X2 2.5hr sessions a week.
This started in January this year and the nursery have been amazing, she has also been referred to the CDC who are assessing her (although I'm still not sure exactly what they do, any help is welcome)
Progress is slow but it is coming..., Does not necessarily point to autism, but it is one of the tests when they are looking into autism.
I would get a 2nd & 3rd opinion., Inconclusive tests mean nothing if you're looking for correlation to autism. However, you knowing that she can definitely hear but doesn't react to sounds in a typical way is absolutely related to autism. Your next step should be with early intervention (if you haven't already)., My child at this age had hearing loss. Everyone was astonished as thought that they heard and responded as though they did. So please don't assume that what you perceive as evidence of hearing means your child is hearing or is hearing at all frequencies. Like yours, we had multiple inconclusive tests at birth.
In fact, I'd think the fact these are all inconclusive tests makes pushing for a follow-up more pertinent. Did he have the test in a booth or the test where they have the toys that move with a sound so they turn? Also, don't forget they're older now, so they may respond differently, too. And if all else fails, maybe look into getting lo used to wearing headphones or ear defenders to make the test as likely to be as successful as it can be.., My son recently had a hearing test where they asked us to bring him in sleepy and administered very low dosage of chloral hydrate which made him get in a deep sleep state for about an hour - they were able to do the test and then he simply woke up like he wakes up from a nap. Maybe discuss with your doctors if this is an option for you., Thank you, it's been an absolute battle trying to get anyone to listen to be honest, she is almost 3 and her health visitor only met her 6 months ago - she was here to weigh my newborn and tick some boxes but I refused to talk to her about him until she listened to me about my girl who i had concerns about (it's not just her hearing, she has development delays in several areas, no sense of self or safety, wasn't responding to her name or anything else really, didn't engage with anyone unless she needed you to get something or be of service... frequent meltdowns. ) By that point I'd already had her referred to salt, audiology and paediatric via her GP, she had seen the paed and been to have genetic testing. So we were basically left in the lurch awaiting results and follow ups.
I had to beg for an early referral to nursery, waited months but she was given X2 2.5hr sessions a week.
This started in January this year and the nursery have been amazing, she has also been referred to the CDC who are assessing her (although I'm still not sure exactly what they do, any help is welcome)
Progress is slow but it is coming..., Does not necessarily point to autism, but it is one of the tests when they are looking into autism.
I would get a 2nd & 3rd opinion., Inconclusive tests mean nothing if you're looking for correlation to autism. However, you knowing that she can definitely hear but doesn't react to sounds in a typical way is absolutely related to autism. Your next step should be with early intervention (if you haven't already)., My child at this age had hearing loss. Everyone was astonished as thought that they heard and responded as though they did. So please don't assume that what you perceive as evidence of hearing means your child is hearing or is hearing at all frequencies. Like yours, we had multiple inconclusive tests at birth.
In fact, I'd think the fact these are all inconclusive tests makes pushing for a follow-up more pertinent. Did he have the test in a booth or the test where they have the toys that move with a sound so they turn? Also, don't forget they're older now, so they may respond differently, too. And if all else fails, maybe look into getting lo used to wearing headphones or ear defenders to make the test as likely to be as successful as it can be.., My son recently had a hearing test where they asked us to bring him in sleepy and administered very low dosage of chloral hydrate which made him get in a deep sleep state for about an hour - they were able to do the test and then he simply woke up like he wakes up from a nap. Maybe discuss with your doctors if this is an option for you., Thank you, it's been an absolute battle trying to get anyone to listen to be honest, she is almost 3 and her health visitor only met her 6 months ago - she was here to weigh my newborn and tick some boxes but I refused to talk to her about him until she listened to me about my girl who i had concerns about (it's not just her hearing, she has development delays in several areas, no sense of self or safety, wasn't responding to her name or anything else really, didn't engage with anyone unless she needed you to get something or be of service... frequent meltdowns. ) By that point I'd already had her referred to salt, audiology and paediatric via her GP, she had seen the paed and been to have genetic testing. So we were basically left in the lurch awaiting results and follow ups.
I had to beg for an early referral to nursery, waited months but she was given X2 2.5hr sessions a week.
This started in January this year and the nursery have been amazing, she has also been referred to the CDC who are assessing her (although I'm still not sure exactly what they do, any help is welcome)
Progress is slow but it is coming...
|
Increased outbursts
|
Daughter (8) is high functioning, but does require some medication for adhd and her social behaviors are delayed for her age. Typically in public settings she holds it together well, and her fits and outbursts are at home, with varying degrees of severity.
Over the past few weeks her fits have gotten worse with no clear trigger, and in public settings. It involves squeezing her eyes shut, plugging her ears with her fingers and trying to run in another direction. Not sure if this could be a phase, if things can escalate during certain ages?
She sees a therapist weekly, but she doesn’t get much out of our daughter, mostly just some conversation and will propose coping mechanisms but our daughter is a little too young to really out those to use.
Anyone with older kids have advice, experienced something similar? I’m feeling really alone and there aren’t a lot of resources where we are to provide help.
|
My son (8) started with these type of issues a year ago and after a year of trying to get info from teachers and case workers. I think what is triggering him is social interactions/ sensory input. I’ve requested more support for him in class and I’m about to have another amendment meeting for him. I knew he was behind socially I just never realized how big of a trigger it is for him. He keeps it together at school and as soon as he sees me he cries and has all his outburst at home so his teachers were surprised with his behavior.
Also the only thing he is willing to share is the noise level. I requested OT for sensory issues. For the next amendment meeting I’m requesting more support for social skills development with his special Ed intervention and speech goals.
He’s also in the process of getting evaluated for adhd and dyslexia.
I think if they are un happy and start acting out more then usual it’s because something is going on with them that they can’t communicate verbally. We also started learning asl, I have visual cards for him and I have fidgets etc for him everywhere we go.
Everything is important and everything is a clue it just takes time to figure out.
It took me a year but now I know what I need to do for him in regards to requesting additional support for him in school. Because he’s triggered at school. They tried to tell me he’s fine and they also tried to say it’s my parenting. I still kept digging and took time talking to everyone and gathering what I could. Since I’ve requested more support and I started volunteering in his class I can see his meltdowns and aggression towards me have improved. He’s still triggered but they are not happening as often as they were before.
What I learned through everything is they show us everything because we’re there safe place and they trying to tell us something is wrong because they trust us to take care of them. The one thing she is willing to share I would pay the most attention to. My son complained about noise over a year ago and I thought noise cancelling headphones was enough and it wasn’t. It was the tip of the iceberg for him and all these other issues I’ve realized he has in school. And when I brought it up during the iep they brushed it off. I told them though if I didn’t see improvement I would be back for another meeting. We’ve had 3 this year and about to have another. He’s improved but I don’t think it’s where he would be if he wasn’t overwhelmed or so triggered every day at school., My son (8) started with these type of issues a year ago and after a year of trying to get info from teachers and case workers. I think what is triggering him is social interactions/ sensory input. I’ve requested more support for him in class and I’m about to have another amendment meeting for him. I knew he was behind socially I just never realized how big of a trigger it is for him. He keeps it together at school and as soon as he sees me he cries and has all his outburst at home so his teachers were surprised with his behavior.
Also the only thing he is willing to share is the noise level. I requested OT for sensory issues. For the next amendment meeting I’m requesting more support for social skills development with his special Ed intervention and speech goals.
He’s also in the process of getting evaluated for adhd and dyslexia.
I think if they are un happy and start acting out more then usual it’s because something is going on with them that they can’t communicate verbally. We also started learning asl, I have visual cards for him and I have fidgets etc for him everywhere we go.
Everything is important and everything is a clue it just takes time to figure out.
It took me a year but now I know what I need to do for him in regards to requesting additional support for him in school. Because he’s triggered at school. They tried to tell me he’s fine and they also tried to say it’s my parenting. I still kept digging and took time talking to everyone and gathering what I could. Since I’ve requested more support and I started volunteering in his class I can see his meltdowns and aggression towards me have improved. He’s still triggered but they are not happening as often as they were before.
What I learned through everything is they show us everything because we’re there safe place and they trying to tell us something is wrong because they trust us to take care of them. The one thing she is willing to share I would pay the most attention to. My son complained about noise over a year ago and I thought noise cancelling headphones was enough and it wasn’t. It was the tip of the iceberg for him and all these other issues I’ve realized he has in school. And when I brought it up during the iep they brushed it off. I told them though if I didn’t see improvement I would be back for another meeting. We’ve had 3 this year and about to have another. He’s improved but I don’t think it’s where he would be if he wasn’t overwhelmed or so triggered every day at school., My son (8) started with these type of issues a year ago and after a year of trying to get info from teachers and case workers. I think what is triggering him is social interactions/ sensory input. I’ve requested more support for him in class and I’m about to have another amendment meeting for him. I knew he was behind socially I just never realized how big of a trigger it is for him. He keeps it together at school and as soon as he sees me he cries and has all his outburst at home so his teachers were surprised with his behavior.
Also the only thing he is willing to share is the noise level. I requested OT for sensory issues. For the next amendment meeting I’m requesting more support for social skills development with his special Ed intervention and speech goals.
He’s also in the process of getting evaluated for adhd and dyslexia.
I think if they are un happy and start acting out more then usual it’s because something is going on with them that they can’t communicate verbally. We also started learning asl, I have visual cards for him and I have fidgets etc for him everywhere we go.
Everything is important and everything is a clue it just takes time to figure out.
It took me a year but now I know what I need to do for him in regards to requesting additional support for him in school. Because he’s triggered at school. They tried to tell me he’s fine and they also tried to say it’s my parenting. I still kept digging and took time talking to everyone and gathering what I could. Since I’ve requested more support and I started volunteering in his class I can see his meltdowns and aggression towards me have improved. He’s still triggered but they are not happening as often as they were before.
What I learned through everything is they show us everything because we’re there safe place and they trying to tell us something is wrong because they trust us to take care of them. The one thing she is willing to share I would pay the most attention to. My son complained about noise over a year ago and I thought noise cancelling headphones was enough and it wasn’t. It was the tip of the iceberg for him and all these other issues I’ve realized he has in school. And when I brought it up during the iep they brushed it off. I told them though if I didn’t see improvement I would be back for another meeting. We’ve had 3 this year and about to have another. He’s improved but I don’t think it’s where he would be if he wasn’t overwhelmed or so triggered every day at school., My son (8) started with these type of issues a year ago and after a year of trying to get info from teachers and case workers. I think what is triggering him is social interactions/ sensory input. I’ve requested more support for him in class and I’m about to have another amendment meeting for him. I knew he was behind socially I just never realized how big of a trigger it is for him. He keeps it together at school and as soon as he sees me he cries and has all his outburst at home so his teachers were surprised with his behavior.
Also the only thing he is willing to share is the noise level. I requested OT for sensory issues. For the next amendment meeting I’m requesting more support for social skills development with his special Ed intervention and speech goals.
He’s also in the process of getting evaluated for adhd and dyslexia.
I think if they are un happy and start acting out more then usual it’s because something is going on with them that they can’t communicate verbally. We also started learning asl, I have visual cards for him and I have fidgets etc for him everywhere we go.
Everything is important and everything is a clue it just takes time to figure out.
It took me a year but now I know what I need to do for him in regards to requesting additional support for him in school. Because he’s triggered at school. They tried to tell me he’s fine and they also tried to say it’s my parenting. I still kept digging and took time talking to everyone and gathering what I could. Since I’ve requested more support and I started volunteering in his class I can see his meltdowns and aggression towards me have improved. He’s still triggered but they are not happening as often as they were before.
What I learned through everything is they show us everything because we’re there safe place and they trying to tell us something is wrong because they trust us to take care of them. The one thing she is willing to share I would pay the most attention to. My son complained about noise over a year ago and I thought noise cancelling headphones was enough and it wasn’t. It was the tip of the iceberg for him and all these other issues I’ve realized he has in school. And when I brought it up during the iep they brushed it off. I told them though if I didn’t see improvement I would be back for another meeting. We’ve had 3 this year and about to have another. He’s improved but I don’t think it’s where he would be if he wasn’t overwhelmed or so triggered every day at school.
|
Infancy symptoms
|
Hello Lovely people,
I have a close friend whose kid are on spectrum. First we thought it is speech delay and had no other concerns but when they consulted the doctor around 18-24 months age period, autism likelihood was brought up. This was because of symptoms the kid was showing- stimming and few more
On going back to the child’s old video, my friend saw there was always a concern in infancy and early toddlerhood also like no response to name, no imitation, diminished eye contact, no pointing etc
.
It’s just that there was no knowledge about autism, development delays so they never noticed anything.
My question is to parents who were in similar situation, when you met the doc for speech or any other concern and autism was brought up, what infancy and toddlerhood symptoms did you see which you missed because you were not aware of them?
|
My son was a terrible sleeper. Always, always had to be carried around - you could never stop moving or put him down. Was constantly kicking his legs from day two of being born. Flapped his arms when excited. Super intense love for carpet textures, Holes, and lights., I feel like my experience was a little different. My son is 3 1/2 and was diagnosed with borderline moderate high functioning autism this past December. He was a very “easy“ baby he had no preferences for anything, wasn’t very emotional in either regard, not happy or sad just chillin. He didn’t laugh till he was 6m and it was soooo hard to make him laugh. He was generally a great sleeper, but did hit every single sleep aggression and hit them hard. He was on time for most milestones except for rolling and crawling, but I know that’s not really considered a milestone anymore. In the beginning, his language was actually very advanced by the time he was 18 months old he knew the alphabet in and out of order and he could count to 10 on his own, he could also identify the numbers out of order. He also knew his colors and shapes. He did love to up his toys, but at the time it was developmentally appropriate. At around 18 months old, he stopped responding to his name and became an extremely picky eater when he previously wasn’t. We also still thought that his language was advanced because he could label almost anything and would repeat lots of phrases he heard, but would use them correctly. Turns out he was echolalic and hyperlexic, but had low expressive andreceptive language skills. I suspected it as soon as the name and food regression happened but he was my first baby and I was told by friends and family that I’m just a worried ftm lol. He’s currently in ABA full time and does speech/feeding therapy 2x/week. Still looking for OT/PT., No name response, no non-verbal gestures (waving, pointing, clapping) or imitation. Also, severely limited with what he would eat. It’s like all food was traumatizing to him., My daughter showed zero delays and symptoms until we noticed she is still non conversational at 15 months. She could easily go under the radar if it wasn’t for her older brother who was diagnosed. My older son doesn’t show symptoms other than a terrible sleeper at night, posturing when excited, repetitive movement with his legs (looks like jumping) and non conversational. They both have eye contact and can do some gestures., My toddler of 20 months is not diagnosed yet, but have lots of traits that are inside the spectrum and is globally delayed.
Things my kid do:
His joint attention is good
He brings/shared his toys (doesn't like to play alone)
His eye contact is decent (he does refused sometimes to look at strangers)
Points atypical (using whole hand open) to request what he wants and to ask for help about a object he can't reach.
Speech delayed (he have 8 single words only)
Name response is ok
He claps, high5, asked to be picked up, but no waving
Plays correctly with toys (3 months ago he used to play incorrectly)
Very social with adults, kids and babies
He approach kids, babies or adults to socialized/play with.
His receptive language is not that good (he understand more easily through visual command than by listening)
He stims (hand flap when happy, teeth grinding when nervous)
We are in the process of genétic testing first before jumping into more evaluation to see how things will go for him., What about name response, pointing, joint attention?, By conversational- you mean actual words?
She was pointing, had joint attention etc?, Name response was okay until 12 months then it was like he was deaf. His receptive language has only just improved in the past month.
He has only just begun pointing here and there (he's 15 months). But we suspect dyspraxia as well. He never points to show us something he's interested in, only to relay something he wants.
Joint attention is hit and miss. Before 12 months, he would excitedly look at people he loved when he was playing with something. Now he's too hyperfocused to do that. Now he looks at you to tell you he wants to parallel play, but not in a, "look at this! This is fun/cool!" type of way. He does want us to be involved in all of his playing activity, but nothing past the parallel play.
Edit to add:
Another sign was being terrified of a lot of noises. Ever since birth., She is not conversational yet but she uses words to label and requests. She can point with one finger, reach up asking to be picked up, wave, blow kisses, tap me for attention, do joint attention but she doesn’t look if I pointed at something, Do you have a diagnosis already?
I mean if points, has some joint attention etc, would it bot be wait till 18 months.
I am in a similar situation and just keeping myself positive. Do you mind if I message you privately?, How old is your daughter? did she learn these skills post therapy?, No, but he's in Early On therapy and they do suspect autism (but have only interacted with him twice so far). He is getting further therapy through OT and speech therapy soon. We are currently trying to get on a wait list for him for a diagnosis.
For us we know in our hearts that he's autistic because he headbangs when he's upset, flaps his arms and goes up on his toes when he's excited, shows very limited interest in what others are doing, takes a miracle to get him to notice what you're saying, does not clap or wave, doesn't point at objects in books (in fact, seems to make no connection between objects in books and objects in real life). Then there's the lack of speaking, doesn't go up to any children, gets overstimulated very easily, scared of people, he can never stop moving, he bolts from situations he doesn't like.... Truly, the list goes on.
You can message, but no guarantee I'll remember to respond. Not out of lack of caring, but we're just going through the devastation part of acceptance and I guess you could say I'm depressed and overwhelmed right now., Also, it's a myth that if they point this early then that means they're not autistic. A woman in my community has a 5 year old child diagnosed with autism and he was pointing and talking early. It also doesn't mean a complete lack of joint attention., She is 2 1/2 now and no she hasn’t gotten therapy yet. My older son is 5 and he only get ABA therapy. He still can’t have back and forth conversation despite therapist trying to make him to., I understand and I completely get it. I have had stays where I feel that big pit in my stomach and pray all this is just a dream.
I sometimes cry so hard and lay on floor for so long while I howl but nothing makes me feel even ok., That’s the first time I am hearing this.
All parents I have spoken to said, pointing was an acquired skill for their child., Absolutely. The pain is intense, especially because you have no idea what your future will look like and it's all so isolating., and I so wish that someone can come today and show me how he will be as a teenager, an adult.
I was never superstitious but have got my tarot done thrice since he was born, My son was a terrible sleeper. Always, always had to be carried around - you could never stop moving or put him down. Was constantly kicking his legs from day two of being born. Flapped his arms when excited. Super intense love for carpet textures, Holes, and lights., I feel like my experience was a little different. My son is 3 1/2 and was diagnosed with borderline moderate high functioning autism this past December. He was a very “easy“ baby he had no preferences for anything, wasn’t very emotional in either regard, not happy or sad just chillin. He didn’t laugh till he was 6m and it was soooo hard to make him laugh. He was generally a great sleeper, but did hit every single sleep aggression and hit them hard. He was on time for most milestones except for rolling and crawling, but I know that’s not really considered a milestone anymore. In the beginning, his language was actually very advanced by the time he was 18 months old he knew the alphabet in and out of order and he could count to 10 on his own, he could also identify the numbers out of order. He also knew his colors and shapes. He did love to up his toys, but at the time it was developmentally appropriate. At around 18 months old, he stopped responding to his name and became an extremely picky eater when he previously wasn’t. We also still thought that his language was advanced because he could label almost anything and would repeat lots of phrases he heard, but would use them correctly. Turns out he was echolalic and hyperlexic, but had low expressive andreceptive language skills. I suspected it as soon as the name and food regression happened but he was my first baby and I was told by friends and family that I’m just a worried ftm lol. He’s currently in ABA full time and does speech/feeding therapy 2x/week. Still looking for OT/PT., No name response, no non-verbal gestures (waving, pointing, clapping) or imitation. Also, severely limited with what he would eat. It’s like all food was traumatizing to him., My daughter showed zero delays and symptoms until we noticed she is still non conversational at 15 months. She could easily go under the radar if it wasn’t for her older brother who was diagnosed. My older son doesn’t show symptoms other than a terrible sleeper at night, posturing when excited, repetitive movement with his legs (looks like jumping) and non conversational. They both have eye contact and can do some gestures., My toddler of 20 months is not diagnosed yet, but have lots of traits that are inside the spectrum and is globally delayed.
Things my kid do:
His joint attention is good
He brings/shared his toys (doesn't like to play alone)
His eye contact is decent (he does refused sometimes to look at strangers)
Points atypical (using whole hand open) to request what he wants and to ask for help about a object he can't reach.
Speech delayed (he have 8 single words only)
Name response is ok
He claps, high5, asked to be picked up, but no waving
Plays correctly with toys (3 months ago he used to play incorrectly)
Very social with adults, kids and babies
He approach kids, babies or adults to socialized/play with.
His receptive language is not that good (he understand more easily through visual command than by listening)
He stims (hand flap when happy, teeth grinding when nervous)
We are in the process of genétic testing first before jumping into more evaluation to see how things will go for him., What about name response, pointing, joint attention?, By conversational- you mean actual words?
She was pointing, had joint attention etc?, Name response was okay until 12 months then it was like he was deaf. His receptive language has only just improved in the past month.
He has only just begun pointing here and there (he's 15 months). But we suspect dyspraxia as well. He never points to show us something he's interested in, only to relay something he wants.
Joint attention is hit and miss. Before 12 months, he would excitedly look at people he loved when he was playing with something. Now he's too hyperfocused to do that. Now he looks at you to tell you he wants to parallel play, but not in a, "look at this! This is fun/cool!" type of way. He does want us to be involved in all of his playing activity, but nothing past the parallel play.
Edit to add:
Another sign was being terrified of a lot of noises. Ever since birth., She is not conversational yet but she uses words to label and requests. She can point with one finger, reach up asking to be picked up, wave, blow kisses, tap me for attention, do joint attention but she doesn’t look if I pointed at something, Do you have a diagnosis already?
I mean if points, has some joint attention etc, would it bot be wait till 18 months.
I am in a similar situation and just keeping myself positive. Do you mind if I message you privately?, How old is your daughter? did she learn these skills post therapy?, No, but he's in Early On therapy and they do suspect autism (but have only interacted with him twice so far). He is getting further therapy through OT and speech therapy soon. We are currently trying to get on a wait list for him for a diagnosis.
For us we know in our hearts that he's autistic because he headbangs when he's upset, flaps his arms and goes up on his toes when he's excited, shows very limited interest in what others are doing, takes a miracle to get him to notice what you're saying, does not clap or wave, doesn't point at objects in books (in fact, seems to make no connection between objects in books and objects in real life). Then there's the lack of speaking, doesn't go up to any children, gets overstimulated very easily, scared of people, he can never stop moving, he bolts from situations he doesn't like.... Truly, the list goes on.
You can message, but no guarantee I'll remember to respond. Not out of lack of caring, but we're just going through the devastation part of acceptance and I guess you could say I'm depressed and overwhelmed right now., Also, it's a myth that if they point this early then that means they're not autistic. A woman in my community has a 5 year old child diagnosed with autism and he was pointing and talking early. It also doesn't mean a complete lack of joint attention., She is 2 1/2 now and no she hasn’t gotten therapy yet. My older son is 5 and he only get ABA therapy. He still can’t have back and forth conversation despite therapist trying to make him to., I understand and I completely get it. I have had stays where I feel that big pit in my stomach and pray all this is just a dream.
I sometimes cry so hard and lay on floor for so long while I howl but nothing makes me feel even ok., That’s the first time I am hearing this.
All parents I have spoken to said, pointing was an acquired skill for their child., Absolutely. The pain is intense, especially because you have no idea what your future will look like and it's all so isolating., and I so wish that someone can come today and show me how he will be as a teenager, an adult.
I was never superstitious but have got my tarot done thrice since he was born, My son was a terrible sleeper. Always, always had to be carried around - you could never stop moving or put him down. Was constantly kicking his legs from day two of being born. Flapped his arms when excited. Super intense love for carpet textures, Holes, and lights., I feel like my experience was a little different. My son is 3 1/2 and was diagnosed with borderline moderate high functioning autism this past December. He was a very “easy“ baby he had no preferences for anything, wasn’t very emotional in either regard, not happy or sad just chillin. He didn’t laugh till he was 6m and it was soooo hard to make him laugh. He was generally a great sleeper, but did hit every single sleep aggression and hit them hard. He was on time for most milestones except for rolling and crawling, but I know that’s not really considered a milestone anymore. In the beginning, his language was actually very advanced by the time he was 18 months old he knew the alphabet in and out of order and he could count to 10 on his own, he could also identify the numbers out of order. He also knew his colors and shapes. He did love to up his toys, but at the time it was developmentally appropriate. At around 18 months old, he stopped responding to his name and became an extremely picky eater when he previously wasn’t. We also still thought that his language was advanced because he could label almost anything and would repeat lots of phrases he heard, but would use them correctly. Turns out he was echolalic and hyperlexic, but had low expressive andreceptive language skills. I suspected it as soon as the name and food regression happened but he was my first baby and I was told by friends and family that I’m just a worried ftm lol. He’s currently in ABA full time and does speech/feeding therapy 2x/week. Still looking for OT/PT., No name response, no non-verbal gestures (waving, pointing, clapping) or imitation. Also, severely limited with what he would eat. It’s like all food was traumatizing to him., My daughter showed zero delays and symptoms until we noticed she is still non conversational at 15 months. She could easily go under the radar if it wasn’t for her older brother who was diagnosed. My older son doesn’t show symptoms other than a terrible sleeper at night, posturing when excited, repetitive movement with his legs (looks like jumping) and non conversational. They both have eye contact and can do some gestures., My toddler of 20 months is not diagnosed yet, but have lots of traits that are inside the spectrum and is globally delayed.
Things my kid do:
His joint attention is good
He brings/shared his toys (doesn't like to play alone)
His eye contact is decent (he does refused sometimes to look at strangers)
Points atypical (using whole hand open) to request what he wants and to ask for help about a object he can't reach.
Speech delayed (he have 8 single words only)
Name response is ok
He claps, high5, asked to be picked up, but no waving
Plays correctly with toys (3 months ago he used to play incorrectly)
Very social with adults, kids and babies
He approach kids, babies or adults to socialized/play with.
His receptive language is not that good (he understand more easily through visual command than by listening)
He stims (hand flap when happy, teeth grinding when nervous)
We are in the process of genétic testing first before jumping into more evaluation to see how things will go for him., What about name response, pointing, joint attention?, By conversational- you mean actual words?
She was pointing, had joint attention etc?, Name response was okay until 12 months then it was like he was deaf. His receptive language has only just improved in the past month.
He has only just begun pointing here and there (he's 15 months). But we suspect dyspraxia as well. He never points to show us something he's interested in, only to relay something he wants.
Joint attention is hit and miss. Before 12 months, he would excitedly look at people he loved when he was playing with something. Now he's too hyperfocused to do that. Now he looks at you to tell you he wants to parallel play, but not in a, "look at this! This is fun/cool!" type of way. He does want us to be involved in all of his playing activity, but nothing past the parallel play.
Edit to add:
Another sign was being terrified of a lot of noises. Ever since birth., She is not conversational yet but she uses words to label and requests. She can point with one finger, reach up asking to be picked up, wave, blow kisses, tap me for attention, do joint attention but she doesn’t look if I pointed at something, Do you have a diagnosis already?
I mean if points, has some joint attention etc, would it bot be wait till 18 months.
I am in a similar situation and just keeping myself positive. Do you mind if I message you privately?, How old is your daughter? did she learn these skills post therapy?, No, but he's in Early On therapy and they do suspect autism (but have only interacted with him twice so far). He is getting further therapy through OT and speech therapy soon. We are currently trying to get on a wait list for him for a diagnosis.
For us we know in our hearts that he's autistic because he headbangs when he's upset, flaps his arms and goes up on his toes when he's excited, shows very limited interest in what others are doing, takes a miracle to get him to notice what you're saying, does not clap or wave, doesn't point at objects in books (in fact, seems to make no connection between objects in books and objects in real life). Then there's the lack of speaking, doesn't go up to any children, gets overstimulated very easily, scared of people, he can never stop moving, he bolts from situations he doesn't like.... Truly, the list goes on.
You can message, but no guarantee I'll remember to respond. Not out of lack of caring, but we're just going through the devastation part of acceptance and I guess you could say I'm depressed and overwhelmed right now., Also, it's a myth that if they point this early then that means they're not autistic. A woman in my community has a 5 year old child diagnosed with autism and he was pointing and talking early. It also doesn't mean a complete lack of joint attention., She is 2 1/2 now and no she hasn’t gotten therapy yet. My older son is 5 and he only get ABA therapy. He still can’t have back and forth conversation despite therapist trying to make him to., I understand and I completely get it. I have had stays where I feel that big pit in my stomach and pray all this is just a dream.
I sometimes cry so hard and lay on floor for so long while I howl but nothing makes me feel even ok., That’s the first time I am hearing this.
All parents I have spoken to said, pointing was an acquired skill for their child., Absolutely. The pain is intense, especially because you have no idea what your future will look like and it's all so isolating., and I so wish that someone can come today and show me how he will be as a teenager, an adult.
I was never superstitious but have got my tarot done thrice since he was born, My son was a terrible sleeper. Always, always had to be carried around - you could never stop moving or put him down. Was constantly kicking his legs from day two of being born. Flapped his arms when excited. Super intense love for carpet textures, Holes, and lights., I feel like my experience was a little different. My son is 3 1/2 and was diagnosed with borderline moderate high functioning autism this past December. He was a very “easy“ baby he had no preferences for anything, wasn’t very emotional in either regard, not happy or sad just chillin. He didn’t laugh till he was 6m and it was soooo hard to make him laugh. He was generally a great sleeper, but did hit every single sleep aggression and hit them hard. He was on time for most milestones except for rolling and crawling, but I know that’s not really considered a milestone anymore. In the beginning, his language was actually very advanced by the time he was 18 months old he knew the alphabet in and out of order and he could count to 10 on his own, he could also identify the numbers out of order. He also knew his colors and shapes. He did love to up his toys, but at the time it was developmentally appropriate. At around 18 months old, he stopped responding to his name and became an extremely picky eater when he previously wasn’t. We also still thought that his language was advanced because he could label almost anything and would repeat lots of phrases he heard, but would use them correctly. Turns out he was echolalic and hyperlexic, but had low expressive andreceptive language skills. I suspected it as soon as the name and food regression happened but he was my first baby and I was told by friends and family that I’m just a worried ftm lol. He’s currently in ABA full time and does speech/feeding therapy 2x/week. Still looking for OT/PT., No name response, no non-verbal gestures (waving, pointing, clapping) or imitation. Also, severely limited with what he would eat. It’s like all food was traumatizing to him., My daughter showed zero delays and symptoms until we noticed she is still non conversational at 15 months. She could easily go under the radar if it wasn’t for her older brother who was diagnosed. My older son doesn’t show symptoms other than a terrible sleeper at night, posturing when excited, repetitive movement with his legs (looks like jumping) and non conversational. They both have eye contact and can do some gestures., My toddler of 20 months is not diagnosed yet, but have lots of traits that are inside the spectrum and is globally delayed.
Things my kid do:
His joint attention is good
He brings/shared his toys (doesn't like to play alone)
His eye contact is decent (he does refused sometimes to look at strangers)
Points atypical (using whole hand open) to request what he wants and to ask for help about a object he can't reach.
Speech delayed (he have 8 single words only)
Name response is ok
He claps, high5, asked to be picked up, but no waving
Plays correctly with toys (3 months ago he used to play incorrectly)
Very social with adults, kids and babies
He approach kids, babies or adults to socialized/play with.
His receptive language is not that good (he understand more easily through visual command than by listening)
He stims (hand flap when happy, teeth grinding when nervous)
We are in the process of genétic testing first before jumping into more evaluation to see how things will go for him., What about name response, pointing, joint attention?, By conversational- you mean actual words?
She was pointing, had joint attention etc?, Name response was okay until 12 months then it was like he was deaf. His receptive language has only just improved in the past month.
He has only just begun pointing here and there (he's 15 months). But we suspect dyspraxia as well. He never points to show us something he's interested in, only to relay something he wants.
Joint attention is hit and miss. Before 12 months, he would excitedly look at people he loved when he was playing with something. Now he's too hyperfocused to do that. Now he looks at you to tell you he wants to parallel play, but not in a, "look at this! This is fun/cool!" type of way. He does want us to be involved in all of his playing activity, but nothing past the parallel play.
Edit to add:
Another sign was being terrified of a lot of noises. Ever since birth., She is not conversational yet but she uses words to label and requests. She can point with one finger, reach up asking to be picked up, wave, blow kisses, tap me for attention, do joint attention but she doesn’t look if I pointed at something, Do you have a diagnosis already?
I mean if points, has some joint attention etc, would it bot be wait till 18 months.
I am in a similar situation and just keeping myself positive. Do you mind if I message you privately?, How old is your daughter? did she learn these skills post therapy?, No, but he's in Early On therapy and they do suspect autism (but have only interacted with him twice so far). He is getting further therapy through OT and speech therapy soon. We are currently trying to get on a wait list for him for a diagnosis.
For us we know in our hearts that he's autistic because he headbangs when he's upset, flaps his arms and goes up on his toes when he's excited, shows very limited interest in what others are doing, takes a miracle to get him to notice what you're saying, does not clap or wave, doesn't point at objects in books (in fact, seems to make no connection between objects in books and objects in real life). Then there's the lack of speaking, doesn't go up to any children, gets overstimulated very easily, scared of people, he can never stop moving, he bolts from situations he doesn't like.... Truly, the list goes on.
You can message, but no guarantee I'll remember to respond. Not out of lack of caring, but we're just going through the devastation part of acceptance and I guess you could say I'm depressed and overwhelmed right now., Also, it's a myth that if they point this early then that means they're not autistic. A woman in my community has a 5 year old child diagnosed with autism and he was pointing and talking early. It also doesn't mean a complete lack of joint attention., She is 2 1/2 now and no she hasn’t gotten therapy yet. My older son is 5 and he only get ABA therapy. He still can’t have back and forth conversation despite therapist trying to make him to., I understand and I completely get it. I have had stays where I feel that big pit in my stomach and pray all this is just a dream.
I sometimes cry so hard and lay on floor for so long while I howl but nothing makes me feel even ok., That’s the first time I am hearing this.
All parents I have spoken to said, pointing was an acquired skill for their child., Absolutely. The pain is intense, especially because you have no idea what your future will look like and it's all so isolating., and I so wish that someone can come today and show me how he will be as a teenager, an adult.
I was never superstitious but have got my tarot done thrice since he was born
|
Inherited Autism
|
Hello all! My partner and I are baby planning, and I’m just wondering if you could provide me with some insights. Myself (F) and both my brothers are autistic, my father has ADHD, and I’m wondering what the odds are of my child with a neurotypical father being autistic? I suppose my question is, how many of you have Autism - or is your child the first in the family?
Myself and one brother can essentially mask to pass as neurotypical (diagnosed late twenties) and have successful careers and healthy relationships, but the other brother will be in care forever and needs daily support. As his sister, it’ll be necessary that when my parents pass, I become his primary caregiver, which already feels overwhelming. Many people I know with disabled siblings end up caring for them to the degree that they end up with no children of their own.
I suppose I’m bracing for impact and wondering wether this is the kind of thing that gets more severe with generations, if it’s a trend you’ve noticed, and if there’s any advice or recommendations you could share with me from the other side. I am a little (very) anxious about my children inheriting the severity of autism that one of my brothers has, as I’ve also got C-PTSD from being raised alongside him and it was a pretty scary experience (he has seperate housing so would not be a danger to my children)
|
My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!, My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!, My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!, My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!, My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!, My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!, My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!, My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!, My uncles were non verbal until they were 5 and can be passed as NT. I’m not sure if I have speech delay but I can have a conversation as a young child. I am 95% sure I’m on the spectrum and I can be passed as NT. I have 3 kids and two older kids were officially diagnosed and my baby is on waitlist for evaluation. My oldest, a boy, has bad temper tantrum and verbal but non conversational and hyperlexic and hypernumberic. My second, a daughter, is a sweet as a pie and she’s also non conversational but she can talk. My baby boy stims all the time (rocking backward into an arch like a bridge) but he can have back and forth conversation and stellar eye contact. It’s like luck of the draw. I never knew I was autistic until I had kids. If I knew, I might not have kids. It’s pretty stressful because they’re not conservational yet, my heart drops when I get calls from school about my older son’s aggression, and ALOT of judgments and criticism from in-laws. I stayed away from them for peace of mind.
Edit: I want to add that I was diagnosed with inattentive ADHD in middle school and no mention of ASD. I have traits- OCD like tendencies, rituals, tidiness, punctuality, easily overwhelmed and upset, couldn’t make and keep friends, insomnia, picky eating, rumination, stimming (chewing inside my cheek, twirling my hair, nail biting and scraping my tooth with my nail), very sensitive to light and temperature/humidity, extremely sensitive to fragrance, collecting collections and lined up my collection on the floor (TY beanie babies, Winnie the Pooh, polished rocks, colorful 90’s erasers, and Barbie’s), In my case the asd is more severe for my kid than previous generations. He has a significant speech delay. My family is full of high IQ quirky engineers and IT people who were advanced. I'm hoping he makes good progress but it is stressful right now., Neither parent has autism but my husband has ADHD. Son has undetermined (as of now) developmental disorder on the milder side. I'm going to be surprised if it's not determined to be autism in our next appointment. My sister is low support needs ASD and has two high support needs ASD kids out of five, the rest who are NT.
I'm not sure about the general stats for any of this., Autism traits ran in my family, undiagnosed, for four generations that I know of. I did not know I was autistic until my kid was diagnosed, and do not understand why anyone would willingly sign up for this.
If you got family history, you are more likely than not going to have an ND kid., My son is the only autistic person in my family but there are many people with ADHD and/or anxiety which have substantial genetic overlap. The incidence of autism is rising in general. While research suggests that a big portion of this are people with “mild” autism the incidence of profound autism is also rising but at a lower rate. So it’s certainly a possibility for you to have a child with substantial needs but the flip side is even for two NTs their risk is not zero., I am diagnosed ADHD inattentive. Diagnosed 15 years ago, maybe more, as a young adult. I have a lot of traits of ASD and consider myself a highly sensitive person (HSP) so... there's that. My husband had a speech delay as a kid and a stutter. Never diagnosed. One of his brother seems pretty likely on the spectrum, especially as described as a child. Learning disabilities and ADHD run in my family.
We have 3 kids with (currently) low supports needs. One officially diagnosed and the other is waiting. They both seem more pronounced in their behaviors then we did, but who knows, really, how this all works. To me it just seems that we produced ND kids as people who are or have ND traits., Audhd mom to at least one autistic (almost for sure Audhd child) It runs deep in my family, not at all in my husband's. I'm 50/50 on kids getting a diagnosis. But the youngest is still young. So we shall see. I have no regrets about choosing to have them and I do feel privileged to be their mom. Maybe I'd feel more complicated feelings if my kids had more challenges. Really think about it. Your kid(s) could end up profoundly disabled in numerous ways. It's the lottery you play as a parent. And parenting seriously is not for everyone. I know it's the expected path but it doesn't have to be yours. My babies are the best part of my life and I would never go back and change anything. But I went in eyes wide open and willing to potentially give my life to a profoundly disabled person. You should only proceed if you can do that too.
Edit: to answer the question: no. The autism presents pretty similarly through the generations. I am very like my mother who is very like her mother and my daughter was born with a brain just like mine. The biggest differences have been between the autistic symptoms of male vs female members. , My daughter was just diagnosed at 5yo, and going through the process made me realize I’m likely autistic too… my therapist confirmed and believes I’m AuDHD. When I told my mom, she ended up realizing that she, her brother, and her father all had autistic traits. So that’s four generations on my side likely or diagnosed autistic. My daughter is a carbon copy of me who is very similar to my mom who is very similar to her dad. All loners with sensory issues and lifelong mental health struggles. All high-masking.
My husband has ND traits but it’s not clear how he’d be classified. ADHD runs in his family and his sister was late-diagnosed autistic.
Anyway, in our case at least it seems that my daughter’s autism greatly resembles my own, which is similar to my mom’s. High-masking, typical development in meeting milestones, low support needs., On my side of the family, 2 of my sisters are autistic and I have Anxiety/Depression and im pretty sure im probably on the spectrum somewhere but havent sought out to find out for sure. My husband's side, he has an aunt and cousin on the spectrum and has undiagnosed ADHD. Our son was speech delayed when he was younger, and our daughter has autism., It’s pretty heavily debated weather or not any ND are inherited.
Their are likely mild cases in ever generation, if we diagnosed they way we did now 30, 50 or 100 years ago we would have clearer data.
If you have a history of it, you can maybe consider it be possible. But not having any past family members doesn’t rule your child out either., There is probably about a 50% chance per kid that you can pass on your inherited ND issues. Sounds like it's highly passed on in your family if your siblings and self are all diagnosed., Your chances are very low that your kid will have autism. It's the father's genes that determines whether a kid will be autistic or not., Thank you for the answer, I really want to make sure my kids are supported… my partner has always wanted two back to back, but I think if we have kids we should try for a long enough break between them to determine if they are neurotypical or not, world can be so hard to navigate, [deleted], Same, and my husband’s side has ADHD so my child has both. I feel guilty for not knowing and passing it on to my sweet child. Love them more than anything but seeing them struggle is HARD, sad, and stressful., Did the autism get worse at every generation?, So I called my dad and he believes his father also had autism, so I’m at minimum generation 3. Since I’ve endometriosis I might require IVF, would it be insane of me to gender select girls who are more likely to hit milestones etc? I feel a bit mental going through all the hypotheticals here. My brother who is more disabled has brain damage so it’s hard to know what’s autism and what’s brain damage, and other than him it’s all only been high masking people who if you ask them are very happy to be around, What does low support needs look like?, I know you need to meet kids where they are and made peace with them being born or becoming disabled, but I think autism frightens me because it can’t be screened for and I would feel it was my fault. So really a bit concerned. What are the differences between men and women in your family?, I’m at least generation 3 and myself, father and grandfather all are very happy and fulfilled so if it’s this level, I’m happy?? But it is scary and daunting. I would feel so guilty if I went ahead and had a child and their perceived their experience to be really negative, Yeah it seems to be one of those it’ll happen if it’ll happen scenarios and there’s no way to prevent it even if I adopt or get egg donation.. It seems to be all risk mitigation and my family has excellent health otherwise so I guess It’s a wait and see scenario?? Only other health condition that runs in my family is endometriosis but everyone has managed to conceive naturally, Wtf, not true at all., Definitely NOT true. I'm female, ND issues run in my side of the family, i inherented from my father, who inherited his issues from his mother and i passed ND issues onto my son. Until recently it was thought that mothers were responsible for autism being passed onto children because there are numerous genetic causes to autism found on the X Chromosome. Boys are usually effected more by X Chromosome issues since they only have 1 X, where as girls have milder symptoms because they have 2 Xs so if one X has a mutation, the other can compensate. But X chromosome mutations are not the only chromosomes that have been found to have autism related mutations., Since when?, Don’t know why you get downvoted. This sperm donor passed a high risk autism variant to dozens of children, in some cases the variant rendered the children disabled
https://www.washingtonpost.com/health/the-children-of-donor-h898/2019/09/14/dcc191d8-86da-11e9-a491-25df61c78dc4_story.html, >my partner has always wanted two back to back
As a man that's easy for him to say, and also easy to say in theory before the hard reality of parenting slaps you in the face. The recommended time between pregnancies is 18 months from when one ends til when the next one begins, and for good reason. It gives the mom's body a chance to heal and recover from the strain of pregnancy and childbirth.
I grew up as the older of '2 under 2' and it sucked. My brother was always trying to one-up me and we were only one grade apart... even shared some classes in high school because he was advanced.
Anyway, to answer your original question, there's no way of knowing whether or not your child would be autistic, and you can't predict the level of support your autistic child would need. There's a strong possibility they would be autistic. My parents are both autistic and I'm not diagnosed but I for sure have autistic traits. Now my son is probably going to get an autism diagnosis when we finally get his evaluation in the fall (he will be 3 next month). Good luck to you., Might be an unpopular opinion to say that you’re not obligated to take care of him after your parents passed away. You can put him in a group home and not tell your parents about your plan. Wait 2 years between kids to make sure. I had 3 kids in less than 5 years and I had no idea this was autism when my oldest kid couldn’t have a conversation (it was during Covid lockdown) and I thought it was because of lockdown. So I tried for another baby during that time. To be honest I am sorta glad I was oblivious during my childbearing years or otherwise I will be in great fear during pregnancy and might not even have a third baby., No. Generally very intelligent, quirky people, marrying the same and producing more of the same, present company excluded. ;-P
My oldest did have a speech delay, but I attribute that to oxygen deprivation at birth rather than autism., Can participate and function in a classroom or daycare or camp without much assistance besides maybe some extra verbal redirection from the teacher at transition times. Children are obviously different, but don't require a lot of assistance and support to meet the expectations of NT classroom. That may change as school gets more demanding, but for now things are ok., It's the standard boy vs girl autism. The men are far more obviously autistic to the outside observer, the women are better at masking in general.
Not the rule for everyone but in my family there are very clear differences in how it presents in the women vs the men., You're both getting downvoted because just because fathers carry risk, doesn't mean women don't also carry risk.
Generally speaking, it's actually *more* likely for it to come from mom than dad. Women with autism have a higher genetic load for autism:
[https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:\~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance](https://www.scientificamerican.com/article/females-are-genetically-protected-from-autism/#:~:text=Genetic%20burden%3A&text=In%20a%202011%20study%2C%20researchers,does%20not%20reach%20statistical%20significance)., The CDC latest report on autism prevalence has found out profound autism affects women almost as much as men. Profoundly autistics can’t pass autism , because they can’t consent to be intimate . What this means is that there are more men passing autism than women - because they don’t need to have a high genetic load to have autism, having a high genetic load increases the risk of severe autism which would prevent them to reproduce, I’d love to have my partners child, so I’m wondering if seeking out an egg donor would be an option? But since a lot of autism seems to be random, there wouldn’t even be a guarantee that an egg donor child would be neurotypical? I’m just at a bit of a loss. My brother seems happy to take the gamble, and I would be totally happy to raise a child with my level of ability, but it’s a scary dice roll - I’ve no problems with neurodivergence but I’ve seen the obstacles first hand and they’re rough, Oh god, I’m honestly having a bit of a panic attack. I’ve always dreamed of having children and I’m really in a bit of pain and spiralling over this one, Hi, I have ASD boys and wanted a girl and thinking about egg donor. So please do more research before going thay way. I joined one egg donation group, and one girl was asking for steps to donate eggs. So i was interested and searching about her and later found that she has a kid who is on the spectrum i was shocked. Then, one girl was asking if she could donate an egg if she was taking bipolar medication. I kind of gave up. But one hospital was assuring us that we can talk to the egg donor and see her children during the process. So please fo complete research before selecting the donor or ask someone who you know well., No one but yourself is stopping you. Just make sure to get your financial/mental health ducks in a row before you do.
I spent the last 5 years sitting around therapist offices. Did it pay off? Yes, eventually. We still don't know if he will ever be independent though., All my life, career, housing decisions up until this point in my life have been to best facilitate support for my kids… flexible work, high income, safe neighbourhood :(, Oh goodness… I’m seeing a lot of indictors that having any child is a dice roll, so maybe I will try and carry my own. My severe brother has brain damage so it’s hard to know how much of his behavior is genetic vs injury based, and everyone else is happy and buzzing away in our weird little ways… I have zero history of cancer, diabetes, heart disease, alzheimers, all members live until well into 80s… not the worst make up for sure. Partner comes from a family of marathon runners and medical professionals. Maybe ive got to stop assuming I’m the worst possible option!!!
|
Insight from parents..
|
Hello parents!
I’ve been a special education teacher for 6 years and have been working and studying autism and a little ABA for the past few years. I am currently teaching an autism program and I LOVE it! I just want to get some insight from parents, as I am trying to hypothesis a new way to approach the classroom.
I am particularly interested in ages 3-7, and children who are non verbal.
My first question for parents:
Positives / negatives of early ABA and services outside of school?
Communication desires with team members apart of your child’s school program:
Does your child engage in any violent behavior on others or theirselves? If so, does your child have services outside of the classroom (ABA, speech, ot, pt)
What do you allow your child to do in their free time?
Do you find your child is happy in more of a natural environment or structured environment?
If your child engages in tantrums do you prefer handling it in an ABA way (more monotone, won’t give the child what they want until they calm down, until they earned something) or do you approach it in a more nurturing way (giving sensory input, calming child lovingly)?
Explain the benefits of which way you handle your child’s tantrums:
I want to thank everyone in advance for participating. I find this really helps me as an educator and learning more about autism getting insight from the parents versus the professionals.
|
The ABA method as you described (monotone, etc) is almost always guaranteed to escalate my child unless they're already well regulated and the issue incredibly minor.
Typically, meltdowns have an underlying unmet sensory need. My child hasn't had enough heavy work or outdoor time, or it can be a strange overwhelming smell. It may be something causing anxiety. She's not able to articulate necessarily what she needs, it's just suddenly becoming overwhelmed and anxious and so she will try to control things in the environment. That looks to us like demands, but for her it's trying to be in more control of a moment that is overwhelming. If I don't recognize her distress and try to assist or reassure while also indicating I understand the urgency, it's going to escalate worse.
It's like if you came home overwhelmed because you think you might get fired and your mom called and needs you to take 3 weeks off because she just found out she's terminal and has only weeks left and you walk in the door and your kiddo is covered in mud and is screaming for dinner and you just need one thing to go right and be simple so you say "I'm ordering pizza!" and your partner in monotone voice reminds you that you have budget boundaries and just keeps calmly holding that line. You need them to understand your emotions, to let go of this boundary for once, to be on your side, etc. Monotone and holding an arbitrary line when I'm in meltdown distress? No.
What does work? Remove any anxiety inducing expectation. Provide comfort items. Get outside. Find an alternative. Be their advocate. Be all in to help. Swing. Fidget. Music. Whatever., Do you mean tantrums or melt downs? They are different., I don’t love the monotone ABA method for tantrums. It feels counterintuitive to me and like it just teaches your child that adults don’t care about their feelings. I try to label his emotions and get him to engage in some calming strategies (counting, breathing). I only do time out if he starts to throw things or does something dangerous meltdowns I handle differently. I try to identify the trigger and take him to a calm safe place (quiet, dark) and let him either snuggle against me or play with a calming sensory toy., My child is limited verbally, he communicates in scripting but is not conversational, he cannot communicate to answer “why/how/who/where/when” questions.
Our experience with therapy outside school (SLP/ot/ABA) have all been positive and beneficial. They have given him tools to express himself and taught us to communicate in a way that sometimes reaches him.
I wish I had any communication with his school SLP and OT, currently have great communication from his gen Ed teacher (through a school app) and sped teacher (we chat every other day at pick up and she sends a note home every day). His last teacher did not communicate concerns in a timely fashion and waited until problems significantly escalated, I always felt like I was bothering her wanting to know how my kid’s day went, but he was even less verbal then and couldn’t tell me anything at all. Still can’t, but I at least have an idea now. His teacher was in her first year and I wish I had just moved him in hindsight.
My child is aggressive when having a meltdown, disregulated and denied something he is fixated on, overstimulated, and also used to be for attention (rarely now). He will hit himself sometimes when he is in trouble. In the last he has kicked walls. He sees speech/ot and ABA.
My child can do just about anything that interests him. Jump, paint, dance, sing, spin anything that spins, scripts his favorite scripts with toys acting them out, run, throw things, swim. Video games are a big deal for him.
My child thrives on structure, clear expectations and routine. He can handle chill time at home for a few days but will get antsy without a visual schedule or predictable meal times. We operate on alarms.
Our ABA people don’t do the calm monotone/until they’ve earned something thing you’re referring to, I don’t think it’s an either/or. Our ABA clinic doesn’t seem to do the things I see adults complain about on here. They are very nurturing, look for the reason/cause of behaviors, he takes a break in his room, only alone if he prefers or is violent, usually we read a book and do a simple puzzle then try being in the common area again. If he is acting out or fixated, changing his physical location helps significantly. It largely depends on the tantrum (rare, and I don’t punish a tantrum, not really something my child has, not sure if you’re meaning a developmentally appropriate protest/typical tantrum?) and what caused it versus meltdowns and acting out. We do refuse to engage and tell him why when he is negative attention seeking (ie jumping on the bed when his nugget is next to it).
We use the verbiage “taking a break” because we hope in the future when he is overwhelmed he will redirect himself to taking a break when he sees the signs; school, ABA, therapists and home all are in agreement on that. He has started to take breaks when he is escalating and we see him showing restraint instead of hitting the adults he’s with., A tantrum can evolve into a meltdown too, if their goal is not met (i.e. giving him the candy). They could get so escalated that they kinda forget what they wanted in the first place . It’s tied to emotional dysregulation, Thank you for this. In the school setting the BCBA labels all incidents as tantrums (demand placed or no demand). I am referring to asking a child to do something resulting in a behavior (screaming crying, ect.), My parent opinion: A tantrum is what a 3 year old does when their parent says they cant have a candy bar in the check out lane.
I find this to be ablist language, bc: A meltdown is a full loss of control. It can last over 2 hours. A tantrum ends when the firm parent ignores the behavior in a " reasonable " amount of time.
Do you see the difference?
Since you area asking about younger kids than mine I will try to go back to older memories.
My kid has thrown chromebooks, chairs, stabbed with pencils. All unsafe. Both themselves and others(teachers, fellow students, themselves). At school they had a quiet room, they could come out when they had a calm body. when this happened I would get a report.(I have a bit of PTSD every time I get a phone call from school now.)
At home, I have sent them to their room.I have felt horrified. I have felt hurt. Early on I tried the holding still, but that made it worse. Change of scene, distraction (favorite things/topics) Sensory things work best- ie blanket tent, but they have to be willing.
Edit:I approve of the verb disregulated to describe it., This is great info thank you. I really appreciate it and I think school personnel or any personnel working with children with autism should take in consideration tantrums vs meltdowns. Now that you bring this up I absolutely see the difference in my students, where previously, BCBA would say tantrum. Maybe when student is having a meltdown rather than complying to ABA principals I will try different sensory tactics. Thank you why kitten!!!!!!!
|
Insurance for Therapy
|
Hello,
My son was medically & educationally diagnosed with Level 3 Autism w/ Borderline Intellectual Functioning last month. He started IEP, but hasn't started IPP yet.
I finally had a chance to read his assessments, research on services he can get, and call insurance; and I'm a bit overwhelmed with all the information. I would appreciate some help/advise with some questions I have.
1. I called my insurance for ABA therapy, and told them that I have a medical diagnosis for my son. They told me to get Medical Codes from the psychologist. I sent an email to Regional Center (the diagnosis was done by their psychologist) about it, but I'm afraid that they might just bounce me back and forth. Are they correct that I need a medical diagnosis AND medical codes?
2. Does ABA help with developing joint attention?
3. I read through few government resources, and it seems like I will probably need Medi-Cal for ABA therapy. Specifically, to cover deductible and copays under my insurance, but my income is higher than Medi-Cal requirement. However, I do see that they waive it for "A parent or caretaker relative of an age eligible child". Would my son qualify?
4. Would it be faster to contact the ABA provider first, and have them check with insurance (similar to how other medical bills work)? I would then deal with Medi-Cal and Regional Center for funds not covered by my insurance.
5. How much hours of ABA are recommended?
6. What should I try to push for (or look out for) when setting up IPP with Regional Center? It took them one month after end of IFSP to contact me about IPP (after I kept pushing them), and the coordinator kept only talking about private insurance and Medi-Cal. I'm concerned that I may have to fight for services that my son needs.
Sorry for a lot of beginner questions. Just trying to make sense of all these info at short time.
Thank you
|
My child is not in ABA but in Speech and Occupational Therapies.
You have the diagnosis, which is half the battle.
I would recommend contacting the ABA provider to start the enrollment process, as there may be a wait list. The Provider should have a billing staff who will work to get pre authorization and details regarding what you are covered for from your main insurance provider. They may even work directly with the secondary insurance as well.
Good luck <3 ., Thank you for the advise! I was gonna try to work it out with the Regional Center and the insurance first, so your advise saved me from wasting time., My child is not in ABA but in Speech and Occupational Therapies.
You have the diagnosis, which is half the battle.
I would recommend contacting the ABA provider to start the enrollment process, as there may be a wait list. The Provider should have a billing staff who will work to get pre authorization and details regarding what you are covered for from your main insurance provider. They may even work directly with the secondary insurance as well.
Good luck <3 ., Thank you for the advise! I was gonna try to work it out with the Regional Center and the insurance first, so your advise saved me from wasting time., My child is not in ABA but in Speech and Occupational Therapies.
You have the diagnosis, which is half the battle.
I would recommend contacting the ABA provider to start the enrollment process, as there may be a wait list. The Provider should have a billing staff who will work to get pre authorization and details regarding what you are covered for from your main insurance provider. They may even work directly with the secondary insurance as well.
Good luck <3 ., Thank you for the advise! I was gonna try to work it out with the Regional Center and the insurance first, so your advise saved me from wasting time., My child is not in ABA but in Speech and Occupational Therapies.
You have the diagnosis, which is half the battle.
I would recommend contacting the ABA provider to start the enrollment process, as there may be a wait list. The Provider should have a billing staff who will work to get pre authorization and details regarding what you are covered for from your main insurance provider. They may even work directly with the secondary insurance as well.
Good luck <3 ., Thank you for the advise! I was gonna try to work it out with the Regional Center and the insurance first, so your advise saved me from wasting time.
|
Insurance won’t cover services
|
Looking for help! My son was just officially diagnosed with Autism, Level 2. He starts ABA in August. I found out that my insurance will not cover ABA, Speech, or OT services with an Autism diagnosis. Since he was born with Autism, these services are considered Habilitative and not rehabilitative. My insurance will only cover rehabilitative services.
I spoke with a representative who said I could submit in a letter of medical necessity and their medical team would review.
Has anyone went through this before? My husband’s employer offers insurance that covers habilitated services, so next year we will be fine. Just looking for ways to paid for this from Now till the end of the year.
He is already in early intervention and receives service once’s a week but he needs more.
|
With an autism diagnosis you should be able to get Medicare for your kiddo. That insurance will cover a lot more at some places., Can you apply for Medicaid for your son? Admittedly, I'm in PA, and not terribly familiar with procedures in MD., Yes I am in the US. And my Son got evaluated at Johns Hopkins Hospital. Everything is billed as a habilitated service. I’m in Maryland and there is even a law that the insurance companies have to cover habilitated ASD services. But my insurance carrier (CareFirst Administrators) only needs to follow federal guidelines and not state guidelines, Each state is different along with what insurance will cover. I think mine was 20 session per year and even only half the cost. I would start searching around you're area for special ed schools., Contact your regional center he can become a client and they can help figure out insurance/medicare even if you make too much, Have you tried reaching out to the centers financial services? We got really lucky that insurance considered ABA medically necessary and covered it all but ABC financial reached out to us to let us know our options in the event insurance couldn’t cover it all. They should be able to help you with resources in regards to insurance and what else you can do in this instance. Good luck you got this!!, Keep pressing and keep annoying them. Tell them they are being discriminatory. That’s ridiculous. I had the same issue. Look in your states laws too, they hate it when you tell them they are breaking the law. For sure try to get Medicaid, but they could take a long time. Summon your inner Karen., We fell into a similar position. My husband's employer insurance was self funded, and they had a specific exclusion that they would not cover anything related to "autism or any other pervasive developmental delays." Being told my son would have speech therapy covered if his speech delay was due to injury or surgery complication but can't be covered because he was just born that way was infuriating.
We are in Indiana, which has its own state mandate for *group insurance policies* that therapies for an autism diagnosis must be covered, but self funded are exempt from this mandate.
We made too much money for Medicaid, and while we fell within income guidelines for CHIP, that program requires the child to be without any medical insurance for 3 months before they qualify. I sure as hell was NOT having my kid go without *any* insurance for 3 months.
I went on a very long Google search to find information and ended up finding a special program ran through Indiana State Department of Health, called Children's Special Healthcare Services. This program only covers 23 specific diagnoses for kids, things that are long term like cystic fibrosis, severe asthma and autism. They are a payer of last resort, so any other private or Medicaid insurance must be billed first and there are a lot of prior authorization requirements. It also has an income cut off, but it is higher than Medicaid so we were able to squeak in to qualify. I am so thankful I found this program and that we qualified, because we would have really struggled to pay for his evaluation and the year of occupational and speech therapy he got.
Basically no one in any billing departments have heard of this program (except for Riley's Children's Hospital, which is where the programs office is), even though it has been around for 20+years.
Check to see if your state department of health may offer something similar. I don't know how common a program like this is, but it is worth a quick Google search or phone call.
If you have an official diagnosis, definitely check to see if your state has a waiver program and how to apply. You want to apply ASAP if so, because a lot of places have multiple year long waitlists before you qualify. Indiana is currently 2+years and I have heard of other states with waitlists of over 10 years, unless you or your spouse have served in the military which moves you up the waitlist rapidly. These waivers can get your kid Medicaid regardless of income, and also provide funds for other things like respite care, toys or equipment for the home, etc., This does not work if OP makes too much to qualify for Medicaid or the CHIP insurance (the Medicaid that costs a small premium each month.
Or OP could be in a loophole with CHIP like we were: I would have had to wait to drop my son from my husband's employer insurance, force him to be WITHOUT ANY INSURANCE for **3 months** THEN he would qualify for CHIP., ~~Medicare~~ Medicaid
Learn not to confuse the two. I'm going through "coordination of benefits" hell because of this. United rescinding payments and refusing to cough it back up because someone insisted its medicare not medicaid. Seriously., Unfortunately I make too much money. But not enough to pay $5,000 a month for ABA., I am wondering if a letter of medical necessity would work. They said it would work for a gray area. Maybe they would consider that autism being developed vs being born with it, would be a gray area. I would say anything to get it covered, Oh that's awful, have you attempted early intervention through your state? It's subsidized.
My kid doesn't have a diagnosis-- but we did OT & PT at 12 months, and are starting Speech Therapy soon-ish. The state quoted us for $89 a visit. Our insurance through private therapy is $50 a visit.
I couldn't imagine being denied care just because my kid has a formal diagnosis. I'm pursuing the diagnosis (we're on a 1 yr waitlist) because it's abundantly clear at 20 months that she is likely on the spectrum at this point., There is still a federal law that was passed in the 90s that requires them to cover it. I’ll try to find it. I had the same issue, The federal mental health parity law (MHPAEA).MHPAEA is important for anyone who has a mental or behavioral health condition (which ASD is considered). MHPAEA’s goal is to ensure that an insurance plan’s benefits for mental and behavioral conditions are no less generous than benefits for medical conditions. When a plan is compliant with MHPAEA and “has parity,” it means that if you are provided unlimited doctor visits for a chronic condition like diabetes then the plan must offer unlimited visits for a mental health condition such as depression, schizophrenia, or ASD.” So, this means that if your plan doesn’t have those limit caps for other medical services, it would not be able to limit the therapy sessions.” There’s another federal law, trying to find it., AFAIK "regional centers" is a California thing. I've yet to encounter that anywhere else., Ultimately comes down to your state.
Mine has its own version of a Katie Beckett wavier. I didn’t see that OP was in PA. Where they don’t really have much.
As soon as my oldest turned 3 here (AZ)and had a official diagnosis our income no longer mattered and only his own income mattered.(he counts as his own household now for medical)
The usual rules apply though. If there’s an option for other insurance you have to take it and use it as primary insurance then it’ll kick in as secondary to cover the rest., Of course... Who does??, That’s what I went through as well. I’ve had to do everything myself. They wanted $40,000 a year., You should check again.
You'd be qualifying on **disability** not on **income**. Your child is disabled.
In some red states you are screwed, but typically they don't even want to know your income. It falls under Medicaid Waivers which are also free money for other things.
[https://health.maryland.gov/mmcp/waiverprograms/Documents/Autism%20Waiver%20Fact%20Sheet.pdf](https://health.maryland.gov/mmcp/waiverprograms/Documents/Autism%20Waiver%20Fact%20Sheet.pdf)
I would NEVER qualify but my kids have it., You should still be able to just based off the autism diagnosis regardless of your salary. Try to find a case manager or sometimes hospitals have someone who can apply for you., Maybe!! It's worth a shot! I'm really sorry... This is some bullshit., Yes we have weekly session with early intervention. And I can afford private speech so we will start there!, No other states have it. I use the the Kansas City region center. They are part of DMH., Did the insurance ever cover it? How was it doing it alone?, Have you looked into the Mental Health Parity And Addiction Equity Act to ensure your plan with compliant with that? , Yea, that's why I didn't say that decisively.
How about its *mostly* associated with California?
In any case its one of those "depends on state" things and lots don't have that setup., They refused to cover even a penny. It’s been difficult doing but it does allow for flexibility., For sure, Did you try a letter of medical necessity? Sorry for all the questions!, We didn’t qualify. You can still give it a shot it’s always worth trying.
We did have one place tell us that they recommend my husband quit his job so we could go on welfare then get services 😬 yeah, we decided against that., We are on my insurance, but my husbands insurance will cover it. I don’t want to wait for open enrollment! Maybe my work will let me quit and then get rehired the next day lol!, Then definitely try to find a way to get the insurance swapped!, With an autism diagnosis you should be able to get Medicare for your kiddo. That insurance will cover a lot more at some places., Can you apply for Medicaid for your son? Admittedly, I'm in PA, and not terribly familiar with procedures in MD., Yes I am in the US. And my Son got evaluated at Johns Hopkins Hospital. Everything is billed as a habilitated service. I’m in Maryland and there is even a law that the insurance companies have to cover habilitated ASD services. But my insurance carrier (CareFirst Administrators) only needs to follow federal guidelines and not state guidelines, Each state is different along with what insurance will cover. I think mine was 20 session per year and even only half the cost. I would start searching around you're area for special ed schools., Contact your regional center he can become a client and they can help figure out insurance/medicare even if you make too much, Have you tried reaching out to the centers financial services? We got really lucky that insurance considered ABA medically necessary and covered it all but ABC financial reached out to us to let us know our options in the event insurance couldn’t cover it all. They should be able to help you with resources in regards to insurance and what else you can do in this instance. Good luck you got this!!, Keep pressing and keep annoying them. Tell them they are being discriminatory. That’s ridiculous. I had the same issue. Look in your states laws too, they hate it when you tell them they are breaking the law. For sure try to get Medicaid, but they could take a long time. Summon your inner Karen., We fell into a similar position. My husband's employer insurance was self funded, and they had a specific exclusion that they would not cover anything related to "autism or any other pervasive developmental delays." Being told my son would have speech therapy covered if his speech delay was due to injury or surgery complication but can't be covered because he was just born that way was infuriating.
We are in Indiana, which has its own state mandate for *group insurance policies* that therapies for an autism diagnosis must be covered, but self funded are exempt from this mandate.
We made too much money for Medicaid, and while we fell within income guidelines for CHIP, that program requires the child to be without any medical insurance for 3 months before they qualify. I sure as hell was NOT having my kid go without *any* insurance for 3 months.
I went on a very long Google search to find information and ended up finding a special program ran through Indiana State Department of Health, called Children's Special Healthcare Services. This program only covers 23 specific diagnoses for kids, things that are long term like cystic fibrosis, severe asthma and autism. They are a payer of last resort, so any other private or Medicaid insurance must be billed first and there are a lot of prior authorization requirements. It also has an income cut off, but it is higher than Medicaid so we were able to squeak in to qualify. I am so thankful I found this program and that we qualified, because we would have really struggled to pay for his evaluation and the year of occupational and speech therapy he got.
Basically no one in any billing departments have heard of this program (except for Riley's Children's Hospital, which is where the programs office is), even though it has been around for 20+years.
Check to see if your state department of health may offer something similar. I don't know how common a program like this is, but it is worth a quick Google search or phone call.
If you have an official diagnosis, definitely check to see if your state has a waiver program and how to apply. You want to apply ASAP if so, because a lot of places have multiple year long waitlists before you qualify. Indiana is currently 2+years and I have heard of other states with waitlists of over 10 years, unless you or your spouse have served in the military which moves you up the waitlist rapidly. These waivers can get your kid Medicaid regardless of income, and also provide funds for other things like respite care, toys or equipment for the home, etc., This does not work if OP makes too much to qualify for Medicaid or the CHIP insurance (the Medicaid that costs a small premium each month.
Or OP could be in a loophole with CHIP like we were: I would have had to wait to drop my son from my husband's employer insurance, force him to be WITHOUT ANY INSURANCE for **3 months** THEN he would qualify for CHIP., ~~Medicare~~ Medicaid
Learn not to confuse the two. I'm going through "coordination of benefits" hell because of this. United rescinding payments and refusing to cough it back up because someone insisted its medicare not medicaid. Seriously., Unfortunately I make too much money. But not enough to pay $5,000 a month for ABA., I am wondering if a letter of medical necessity would work. They said it would work for a gray area. Maybe they would consider that autism being developed vs being born with it, would be a gray area. I would say anything to get it covered, Oh that's awful, have you attempted early intervention through your state? It's subsidized.
My kid doesn't have a diagnosis-- but we did OT & PT at 12 months, and are starting Speech Therapy soon-ish. The state quoted us for $89 a visit. Our insurance through private therapy is $50 a visit.
I couldn't imagine being denied care just because my kid has a formal diagnosis. I'm pursuing the diagnosis (we're on a 1 yr waitlist) because it's abundantly clear at 20 months that she is likely on the spectrum at this point., There is still a federal law that was passed in the 90s that requires them to cover it. I’ll try to find it. I had the same issue, The federal mental health parity law (MHPAEA).MHPAEA is important for anyone who has a mental or behavioral health condition (which ASD is considered). MHPAEA’s goal is to ensure that an insurance plan’s benefits for mental and behavioral conditions are no less generous than benefits for medical conditions. When a plan is compliant with MHPAEA and “has parity,” it means that if you are provided unlimited doctor visits for a chronic condition like diabetes then the plan must offer unlimited visits for a mental health condition such as depression, schizophrenia, or ASD.” So, this means that if your plan doesn’t have those limit caps for other medical services, it would not be able to limit the therapy sessions.” There’s another federal law, trying to find it., AFAIK "regional centers" is a California thing. I've yet to encounter that anywhere else., Ultimately comes down to your state.
Mine has its own version of a Katie Beckett wavier. I didn’t see that OP was in PA. Where they don’t really have much.
As soon as my oldest turned 3 here (AZ)and had a official diagnosis our income no longer mattered and only his own income mattered.(he counts as his own household now for medical)
The usual rules apply though. If there’s an option for other insurance you have to take it and use it as primary insurance then it’ll kick in as secondary to cover the rest., Of course... Who does??, That’s what I went through as well. I’ve had to do everything myself. They wanted $40,000 a year., You should check again.
You'd be qualifying on **disability** not on **income**. Your child is disabled.
In some red states you are screwed, but typically they don't even want to know your income. It falls under Medicaid Waivers which are also free money for other things.
[https://health.maryland.gov/mmcp/waiverprograms/Documents/Autism%20Waiver%20Fact%20Sheet.pdf](https://health.maryland.gov/mmcp/waiverprograms/Documents/Autism%20Waiver%20Fact%20Sheet.pdf)
I would NEVER qualify but my kids have it., You should still be able to just based off the autism diagnosis regardless of your salary. Try to find a case manager or sometimes hospitals have someone who can apply for you., Maybe!! It's worth a shot! I'm really sorry... This is some bullshit., Yes we have weekly session with early intervention. And I can afford private speech so we will start there!, No other states have it. I use the the Kansas City region center. They are part of DMH., Did the insurance ever cover it? How was it doing it alone?, Have you looked into the Mental Health Parity And Addiction Equity Act to ensure your plan with compliant with that? , Yea, that's why I didn't say that decisively.
How about its *mostly* associated with California?
In any case its one of those "depends on state" things and lots don't have that setup., They refused to cover even a penny. It’s been difficult doing but it does allow for flexibility., For sure, Did you try a letter of medical necessity? Sorry for all the questions!, We didn’t qualify. You can still give it a shot it’s always worth trying.
We did have one place tell us that they recommend my husband quit his job so we could go on welfare then get services 😬 yeah, we decided against that., We are on my insurance, but my husbands insurance will cover it. I don’t want to wait for open enrollment! Maybe my work will let me quit and then get rehired the next day lol!, Then definitely try to find a way to get the insurance swapped!, With an autism diagnosis you should be able to get Medicare for your kiddo. That insurance will cover a lot more at some places., Can you apply for Medicaid for your son? Admittedly, I'm in PA, and not terribly familiar with procedures in MD., Yes I am in the US. And my Son got evaluated at Johns Hopkins Hospital. Everything is billed as a habilitated service. I’m in Maryland and there is even a law that the insurance companies have to cover habilitated ASD services. But my insurance carrier (CareFirst Administrators) only needs to follow federal guidelines and not state guidelines, Each state is different along with what insurance will cover. I think mine was 20 session per year and even only half the cost. I would start searching around you're area for special ed schools., Contact your regional center he can become a client and they can help figure out insurance/medicare even if you make too much, Have you tried reaching out to the centers financial services? We got really lucky that insurance considered ABA medically necessary and covered it all but ABC financial reached out to us to let us know our options in the event insurance couldn’t cover it all. They should be able to help you with resources in regards to insurance and what else you can do in this instance. Good luck you got this!!, Keep pressing and keep annoying them. Tell them they are being discriminatory. That’s ridiculous. I had the same issue. Look in your states laws too, they hate it when you tell them they are breaking the law. For sure try to get Medicaid, but they could take a long time. Summon your inner Karen., We fell into a similar position. My husband's employer insurance was self funded, and they had a specific exclusion that they would not cover anything related to "autism or any other pervasive developmental delays." Being told my son would have speech therapy covered if his speech delay was due to injury or surgery complication but can't be covered because he was just born that way was infuriating.
We are in Indiana, which has its own state mandate for *group insurance policies* that therapies for an autism diagnosis must be covered, but self funded are exempt from this mandate.
We made too much money for Medicaid, and while we fell within income guidelines for CHIP, that program requires the child to be without any medical insurance for 3 months before they qualify. I sure as hell was NOT having my kid go without *any* insurance for 3 months.
I went on a very long Google search to find information and ended up finding a special program ran through Indiana State Department of Health, called Children's Special Healthcare Services. This program only covers 23 specific diagnoses for kids, things that are long term like cystic fibrosis, severe asthma and autism. They are a payer of last resort, so any other private or Medicaid insurance must be billed first and there are a lot of prior authorization requirements. It also has an income cut off, but it is higher than Medicaid so we were able to squeak in to qualify. I am so thankful I found this program and that we qualified, because we would have really struggled to pay for his evaluation and the year of occupational and speech therapy he got.
Basically no one in any billing departments have heard of this program (except for Riley's Children's Hospital, which is where the programs office is), even though it has been around for 20+years.
Check to see if your state department of health may offer something similar. I don't know how common a program like this is, but it is worth a quick Google search or phone call.
If you have an official diagnosis, definitely check to see if your state has a waiver program and how to apply. You want to apply ASAP if so, because a lot of places have multiple year long waitlists before you qualify. Indiana is currently 2+years and I have heard of other states with waitlists of over 10 years, unless you or your spouse have served in the military which moves you up the waitlist rapidly. These waivers can get your kid Medicaid regardless of income, and also provide funds for other things like respite care, toys or equipment for the home, etc., This does not work if OP makes too much to qualify for Medicaid or the CHIP insurance (the Medicaid that costs a small premium each month.
Or OP could be in a loophole with CHIP like we were: I would have had to wait to drop my son from my husband's employer insurance, force him to be WITHOUT ANY INSURANCE for **3 months** THEN he would qualify for CHIP., ~~Medicare~~ Medicaid
Learn not to confuse the two. I'm going through "coordination of benefits" hell because of this. United rescinding payments and refusing to cough it back up because someone insisted its medicare not medicaid. Seriously., Unfortunately I make too much money. But not enough to pay $5,000 a month for ABA., I am wondering if a letter of medical necessity would work. They said it would work for a gray area. Maybe they would consider that autism being developed vs being born with it, would be a gray area. I would say anything to get it covered, Oh that's awful, have you attempted early intervention through your state? It's subsidized.
My kid doesn't have a diagnosis-- but we did OT & PT at 12 months, and are starting Speech Therapy soon-ish. The state quoted us for $89 a visit. Our insurance through private therapy is $50 a visit.
I couldn't imagine being denied care just because my kid has a formal diagnosis. I'm pursuing the diagnosis (we're on a 1 yr waitlist) because it's abundantly clear at 20 months that she is likely on the spectrum at this point., There is still a federal law that was passed in the 90s that requires them to cover it. I’ll try to find it. I had the same issue, The federal mental health parity law (MHPAEA).MHPAEA is important for anyone who has a mental or behavioral health condition (which ASD is considered). MHPAEA’s goal is to ensure that an insurance plan’s benefits for mental and behavioral conditions are no less generous than benefits for medical conditions. When a plan is compliant with MHPAEA and “has parity,” it means that if you are provided unlimited doctor visits for a chronic condition like diabetes then the plan must offer unlimited visits for a mental health condition such as depression, schizophrenia, or ASD.” So, this means that if your plan doesn’t have those limit caps for other medical services, it would not be able to limit the therapy sessions.” There’s another federal law, trying to find it., AFAIK "regional centers" is a California thing. I've yet to encounter that anywhere else., Ultimately comes down to your state.
Mine has its own version of a Katie Beckett wavier. I didn’t see that OP was in PA. Where they don’t really have much.
As soon as my oldest turned 3 here (AZ)and had a official diagnosis our income no longer mattered and only his own income mattered.(he counts as his own household now for medical)
The usual rules apply though. If there’s an option for other insurance you have to take it and use it as primary insurance then it’ll kick in as secondary to cover the rest., Of course... Who does??, That’s what I went through as well. I’ve had to do everything myself. They wanted $40,000 a year., You should check again.
You'd be qualifying on **disability** not on **income**. Your child is disabled.
In some red states you are screwed, but typically they don't even want to know your income. It falls under Medicaid Waivers which are also free money for other things.
[https://health.maryland.gov/mmcp/waiverprograms/Documents/Autism%20Waiver%20Fact%20Sheet.pdf](https://health.maryland.gov/mmcp/waiverprograms/Documents/Autism%20Waiver%20Fact%20Sheet.pdf)
I would NEVER qualify but my kids have it., You should still be able to just based off the autism diagnosis regardless of your salary. Try to find a case manager or sometimes hospitals have someone who can apply for you., Maybe!! It's worth a shot! I'm really sorry... This is some bullshit., Yes we have weekly session with early intervention. And I can afford private speech so we will start there!, No other states have it. I use the the Kansas City region center. They are part of DMH., Did the insurance ever cover it? How was it doing it alone?, Have you looked into the Mental Health Parity And Addiction Equity Act to ensure your plan with compliant with that? , Yea, that's why I didn't say that decisively.
How about its *mostly* associated with California?
In any case its one of those "depends on state" things and lots don't have that setup., They refused to cover even a penny. It’s been difficult doing but it does allow for flexibility., For sure, Did you try a letter of medical necessity? Sorry for all the questions!, We didn’t qualify. You can still give it a shot it’s always worth trying.
We did have one place tell us that they recommend my husband quit his job so we could go on welfare then get services 😬 yeah, we decided against that., We are on my insurance, but my husbands insurance will cover it. I don’t want to wait for open enrollment! Maybe my work will let me quit and then get rehired the next day lol!, Then definitely try to find a way to get the insurance swapped!, With an autism diagnosis you should be able to get Medicare for your kiddo. That insurance will cover a lot more at some places., Can you apply for Medicaid for your son? Admittedly, I'm in PA, and not terribly familiar with procedures in MD., Yes I am in the US. And my Son got evaluated at Johns Hopkins Hospital. Everything is billed as a habilitated service. I’m in Maryland and there is even a law that the insurance companies have to cover habilitated ASD services. But my insurance carrier (CareFirst Administrators) only needs to follow federal guidelines and not state guidelines, Each state is different along with what insurance will cover. I think mine was 20 session per year and even only half the cost. I would start searching around you're area for special ed schools., Contact your regional center he can become a client and they can help figure out insurance/medicare even if you make too much, Have you tried reaching out to the centers financial services? We got really lucky that insurance considered ABA medically necessary and covered it all but ABC financial reached out to us to let us know our options in the event insurance couldn’t cover it all. They should be able to help you with resources in regards to insurance and what else you can do in this instance. Good luck you got this!!, Keep pressing and keep annoying them. Tell them they are being discriminatory. That’s ridiculous. I had the same issue. Look in your states laws too, they hate it when you tell them they are breaking the law. For sure try to get Medicaid, but they could take a long time. Summon your inner Karen., We fell into a similar position. My husband's employer insurance was self funded, and they had a specific exclusion that they would not cover anything related to "autism or any other pervasive developmental delays." Being told my son would have speech therapy covered if his speech delay was due to injury or surgery complication but can't be covered because he was just born that way was infuriating.
We are in Indiana, which has its own state mandate for *group insurance policies* that therapies for an autism diagnosis must be covered, but self funded are exempt from this mandate.
We made too much money for Medicaid, and while we fell within income guidelines for CHIP, that program requires the child to be without any medical insurance for 3 months before they qualify. I sure as hell was NOT having my kid go without *any* insurance for 3 months.
I went on a very long Google search to find information and ended up finding a special program ran through Indiana State Department of Health, called Children's Special Healthcare Services. This program only covers 23 specific diagnoses for kids, things that are long term like cystic fibrosis, severe asthma and autism. They are a payer of last resort, so any other private or Medicaid insurance must be billed first and there are a lot of prior authorization requirements. It also has an income cut off, but it is higher than Medicaid so we were able to squeak in to qualify. I am so thankful I found this program and that we qualified, because we would have really struggled to pay for his evaluation and the year of occupational and speech therapy he got.
Basically no one in any billing departments have heard of this program (except for Riley's Children's Hospital, which is where the programs office is), even though it has been around for 20+years.
Check to see if your state department of health may offer something similar. I don't know how common a program like this is, but it is worth a quick Google search or phone call.
If you have an official diagnosis, definitely check to see if your state has a waiver program and how to apply. You want to apply ASAP if so, because a lot of places have multiple year long waitlists before you qualify. Indiana is currently 2+years and I have heard of other states with waitlists of over 10 years, unless you or your spouse have served in the military which moves you up the waitlist rapidly. These waivers can get your kid Medicaid regardless of income, and also provide funds for other things like respite care, toys or equipment for the home, etc., This does not work if OP makes too much to qualify for Medicaid or the CHIP insurance (the Medicaid that costs a small premium each month.
Or OP could be in a loophole with CHIP like we were: I would have had to wait to drop my son from my husband's employer insurance, force him to be WITHOUT ANY INSURANCE for **3 months** THEN he would qualify for CHIP., ~~Medicare~~ Medicaid
Learn not to confuse the two. I'm going through "coordination of benefits" hell because of this. United rescinding payments and refusing to cough it back up because someone insisted its medicare not medicaid. Seriously., Unfortunately I make too much money. But not enough to pay $5,000 a month for ABA., I am wondering if a letter of medical necessity would work. They said it would work for a gray area. Maybe they would consider that autism being developed vs being born with it, would be a gray area. I would say anything to get it covered, Oh that's awful, have you attempted early intervention through your state? It's subsidized.
My kid doesn't have a diagnosis-- but we did OT & PT at 12 months, and are starting Speech Therapy soon-ish. The state quoted us for $89 a visit. Our insurance through private therapy is $50 a visit.
I couldn't imagine being denied care just because my kid has a formal diagnosis. I'm pursuing the diagnosis (we're on a 1 yr waitlist) because it's abundantly clear at 20 months that she is likely on the spectrum at this point., There is still a federal law that was passed in the 90s that requires them to cover it. I’ll try to find it. I had the same issue, The federal mental health parity law (MHPAEA).MHPAEA is important for anyone who has a mental or behavioral health condition (which ASD is considered). MHPAEA’s goal is to ensure that an insurance plan’s benefits for mental and behavioral conditions are no less generous than benefits for medical conditions. When a plan is compliant with MHPAEA and “has parity,” it means that if you are provided unlimited doctor visits for a chronic condition like diabetes then the plan must offer unlimited visits for a mental health condition such as depression, schizophrenia, or ASD.” So, this means that if your plan doesn’t have those limit caps for other medical services, it would not be able to limit the therapy sessions.” There’s another federal law, trying to find it., AFAIK "regional centers" is a California thing. I've yet to encounter that anywhere else., Ultimately comes down to your state.
Mine has its own version of a Katie Beckett wavier. I didn’t see that OP was in PA. Where they don’t really have much.
As soon as my oldest turned 3 here (AZ)and had a official diagnosis our income no longer mattered and only his own income mattered.(he counts as his own household now for medical)
The usual rules apply though. If there’s an option for other insurance you have to take it and use it as primary insurance then it’ll kick in as secondary to cover the rest., Of course... Who does??, That’s what I went through as well. I’ve had to do everything myself. They wanted $40,000 a year., You should check again.
You'd be qualifying on **disability** not on **income**. Your child is disabled.
In some red states you are screwed, but typically they don't even want to know your income. It falls under Medicaid Waivers which are also free money for other things.
[https://health.maryland.gov/mmcp/waiverprograms/Documents/Autism%20Waiver%20Fact%20Sheet.pdf](https://health.maryland.gov/mmcp/waiverprograms/Documents/Autism%20Waiver%20Fact%20Sheet.pdf)
I would NEVER qualify but my kids have it., You should still be able to just based off the autism diagnosis regardless of your salary. Try to find a case manager or sometimes hospitals have someone who can apply for you., Maybe!! It's worth a shot! I'm really sorry... This is some bullshit., Yes we have weekly session with early intervention. And I can afford private speech so we will start there!, No other states have it. I use the the Kansas City region center. They are part of DMH., Did the insurance ever cover it? How was it doing it alone?, Have you looked into the Mental Health Parity And Addiction Equity Act to ensure your plan with compliant with that? , Yea, that's why I didn't say that decisively.
How about its *mostly* associated with California?
In any case its one of those "depends on state" things and lots don't have that setup., They refused to cover even a penny. It’s been difficult doing but it does allow for flexibility., For sure, Did you try a letter of medical necessity? Sorry for all the questions!, We didn’t qualify. You can still give it a shot it’s always worth trying.
We did have one place tell us that they recommend my husband quit his job so we could go on welfare then get services 😬 yeah, we decided against that., We are on my insurance, but my husbands insurance will cover it. I don’t want to wait for open enrollment! Maybe my work will let me quit and then get rehired the next day lol!, Then definitely try to find a way to get the insurance swapped!
|
Is 3 too young for clonidine?
|
My 3yo stopped napping at 1 and only sleeps about 9 hours with 1 wake up around 3am usually.
But, over the last 7-8 months it’s worsened a lot. He now falls asleep around 10 and is up by 4-5 and does not nap. I can’t function like this. I work. I need sleep. We’ve tried melatonin, we’ve tried magnesium, he has a weighted blanket, a sound machine, takes a lavender chamomille bath before bed.
When I complained about sleep to his dev ped before he said to do the melatonin. I’m thinking about calling and asking for clonidine. Is he too young for it?
|
You would really need to ask a doctor or pharmacist. We can’t tell you if he is too young for the medication.
But if you are asking if it’s ok morally, then that’s up to you. You know your kid the best., Can they not refer him to a sleep clinic? I’m not sure about clonidine but there may be other sleep medication u can try other than melatonin. My son can function on very little sleep too so I know how frustrating it is to get on with your day on little sleep. I do think you should speak to his doctor again. You can’t carry on like this or you will get burnt out., I highly recommend getting a pediatric sleep study. Many of our kiddos have undiagnosed sleep apnea. Yes, medications can help sleep, but they won't help with the lack of oxygen that apnea can cause and that impacts development significantly. See an ENT and discuss airway, discuss a pediatric sleep study. You'll remain with them. Yes, it'll be a rough night, but, let's be honest, we already suffer from rough nights, and it's vital to know the cause. Imagine the meds help with sleep while also preventing you from recognizing your child isn't getting the air they need while sleeping. It's a full stop, don't take that chance, scenario, especially when it's an ENT visit, and one rough night. It's made a huge difference for us., Take him to an ENT to check his tonsils and adenoids. There may be a reason he’s sleeping so little. Get a sleep study done too., You can ask your doctor and the doctor can tell you wether or not if he's too young for it, I have a 3 year old who is on it nightly. He stopped cheering melatonin because of the texture. At first I tried to fight it but after sleepless nights I caved and I’m happy I did. At first he woke up a bit drowsy but after a few days he was good. Good luck and whatever you chose it’s okay :), Yes I plan on calling his dev ped today, but they usually take 1-2 weeks to get back to me so I want to get an idea of if it’s something they prescribe at this age or if I’m getting my hopes up.
I do not have any moral issues with giving my child prescribed medication, I need sleep to be a functioning healthy parent, and he needs sleep as well., Is the sleep study done at home? We had to do an overnight eeg once at a clinic and he screamed the entire time until we got home. They told us we can’t get any useful info from this since he wouldn’t sleep and just cried and screamed.
I totally agree, I cannot carry on like this and need something that works. I can’t afford to quit my job and I can’t keep going on 5-6 hours of sleep every night., Whats the prevalence of sleep apnea in autism?, I’m in Australia and we had to try a whole bunch of stuff just to get it prescribed for my 16 year old. The main issues they had was that it can prevent sleep habits forming naturally, which is silly cause autistic kiddos generally have poor sleep. Also it can lower blood pressure, which for younger kids and those with mobility issues can be a fall risk, due to feeling lightheaded. Also they were worried about my kid being able to communicate the side effects, they were sort about the low blood pressure more than anything else., I’m not sure, my paediatrician said she was gonna make a referral if the new dose of melatonin doesn’t work. It’s still hard to get him to sleep but it’s an improvement. He was staying up 20 hours stretches. I think I saw on a Facebook group a mum saying she was given something else instead of melatonin for her child. They are just reluctant to prescribed it unless it’s absolutely necessary. You definitely need either a higher dose of melatonin or something else entirely. It’s true that 3 year olds don’t really nap but your kid is waking up way too early to not need sleep in between. Doesn’t he get cranky? I definitely think you should push for something to be done because sometimes it doesn’t get better., It's such an important question and they're really just beginning to study it. Some studies indicate up to 11% of children have apnea, with a greater percentage when you include any type of obstructive sleep disorder. Studies on kids with autism indicate the prevalence is greater in autistic kids. It's not insignificant in other words, but how prevalent is still being studied. In truth, many of us parents go straight to meds. How many of us think sleep apnea? But given how severely it can impact development, it's crucial we start talking about this. Meds would mask the symptoms, while compounding the fundamental harm. Here's one source:
https://www.medscape.com/viewarticle/976015, Dang, that really sucks. What kind of things did you try before clonidine? And did they help at all? We’ve been on and off melatonin awhile, it actually seems to make things worse sometimes. Magnesium at least took it from 4/5 hours to 5/6., Yes he is extremely cranky and I’ve seen a dramatic decline in his skills and a huge increase in meltdowns since the sleep has declined. It’s really hard 😭, We had to try melatonin first, it worked for a while but then gave her nightmares, like really vivid ones. So then they tried a bunch of behavioral meds, since they thought sorting out the behavior would settle the sleep issue. Then we had to try and keep trying all the sleep hygiene stuff, which is really hard with ND kids. Then an OT and a psych, to try to get sensory issues and a sort of sleep training I suppose you could call it, and behavioral stuff sorted. Then they went the medical route, so a bunch if tests to rule out anything medical. And we still have to keep up with the sleep hygiene, even though it makes things worse and is stressful for her. I even had stuff in place I just kinda made up, and that was working a little. The. They made me try shirt term antihistamines, they make you a little drowsy, but they only work for a few days before she gets used to them and they don’t make her sleepy.
Then we got clonidine one after I basically broke down and cried in the pediatricians office. I have not slept for more than 4 hours in a row for 16 years now. Even if I have the time to sleep my body just wakes up cause it’s a habit now lol. I was so tired and had big black eyes and looked like a hobo. So they took pity on me and prescribed meds., My son became progressively more aggressive is he only diagnosed with autism? I know autistic children struggle with sleep too but do u have any reason to believe he could also be adhd? It will be hard to tell now but keep an eye on it.
I dunno if it’s feasible for you but sleeping next to him might help. I have had to resort to that or he won’t sleep even with melatonin. I’m a single parent so it doesn’t really bother me, it’s probably not possible if you are married or have a partner., I am so so sorry you went through that for 16 years ❤️. I really hope things are better now., I am married and sleeping next to my partner is one of the few times I get to spend with him..I really don’t want to give that up. I cuddle him to sleep then put him in his room, but even if I go in there and lay down with him when he wakes up, he won’t go back to sleep.
I strongly suspect he’s adhd too., I get that, it will effect your marriage eventually. U can bring up adhd to the paediatrician but it’s unlikely they will assess him yet, at this age it will be unclear whether it’s just normal 3 year old behaviour or adhd.
|
Is an outdoor playset considered a medical device?
|
My son will be 3 and has been in different therapies for the last 10 months. His OT therapist recommended a sensory diet of fairly intense physical activity every hour to help regulate him. We used to be able to toss him around on the couch or swing him, but he’s getting too heavy. We have the space for an outdoor playset, like a big one, but they are quite costly. We thought about a small plastic one but my son is in the 150th percentile in everything, so we want to get one that he can use for more than 6 months. Someone mentioned to me that depending on the circumstance, an outdoor playset might be considered a medical device if it is recommended as part of a child’s treatment plan by their therapist. Has anyone dealt with this before or have any advice?
|
I don’t have any experience on trying to get something like that covered through insurance. However I’d reach out to local Easter Seals and similar organizations to see what grants are available for adaptive equipment., I think that would be stretching it, but stranger things have flown under the radar.
For what it's worth, you can build a large setup for a fraction of the price of those premade play sets., Have you looked into Medicaid waivers in your state yet? I highly suggest you apply for those. That is what people are doing here, not trying to get their private health insurance to pay for it. They get a letter of recommendation/medical necessity from their therapist and then the waiver will pay for it., I often see playsets on Craigslist and Facebook Marketplace for not a lot, with the caveat that you’d have to pick up., My provider told me to get it signed off on my your kids provider, assuming he is in therapy. Then submit for reimbursement. I’m in the US and I didn’t read the whole post. Hope I was able to help., I’ve never heard of them! I’ll definitely look into it., We’re all insured under my husband’s insurance through his work. Would that mean that my son wouldn’t qualify for Medicaid?, No, you can use it as secondary to eliminate your out of pocket costs. That's what we do.
The qualifier for Medicaid is income. However they may qualify based on disability regardless of your income.
This is all dependent on your state unfortunately. Some states (mostly red states) you're just screwed and on your own. In good states you not only qualify for Meidicaid but for waivers which could be thousands of dollars per year that can be spent on this type of equipment, any necessary home modifications (fence for elopement?), respite, swim/equine therapy, etc.
For example in this state (Colorado) two of my children are currently on Medicaid. I would NEVER qualify with my income/assets. Medicaid can pay for an adaptive car seat, adaptive stroller, diapers, etc.
They're both on the CES waiver which is $36k for the year, but I just found out that may be prorated because we started July 1st and apparently its actually like $58k per child per year.
Because CES is a long application process there's another waiver called the FSSP that we got immediately while waiting for the CES waiver. That was another \~$5000 per kid that we spent on locks, sensory equipment, etc.
There was an emergency rule during COVID allowing parents to get paid to do homemaker and community connector services themselves, and apparently they're now looking to make that permanent. I don't know how much that adds up to but will find out soon.
Additionally you can work get paid as a parent caretaker CNA and Medicaid pays for it. That's another $19.50/hr x 35 hours per week.
I always highly recommend looking into all this rather then silently suffer financially., I can’t thank you enough for all of this information. We have been aboard the struggle bus since this whole thing started and haven’t really gotten off of it, lol.
|
Is assessing autism really necessary?
|
I'm curious about the non-monetary advantages of assessments. Have assessments proven effective for you? Do they genuinely aid in children's development by identifying potential areas for improvement? I understand they could offer clarity regarding a child's situation, but aside from social benefits, what other differences do they make?
Currently, my wife and I are at odds over this. I'm hesitant about our child undergoing any assessments, as I'm concerned about creating records. Our child, aged 3.5, doesn't have any significant issues except for language delays (pre-verbal). He's thriving at preschool and elsewhere.
Thank you for sharing your insights.
|
I’m going to give you some tough love on this. Not getting assessed for a diagnosis just because youre hesistant on a label is imho selfish. Labels can change through time, but also labels open doors to extra services that is not currently available to your child because he has not been assessed for a diagnosis. An assessment does not guarantee a diagnosis, but it’s the 1st step to getting one.
My husband said the same thing when my child was 2.5 years old and that he would never trust me again if it came back that our son didn’t have autism. Our son was diagnosed just before his 3rd birthday with level 3 autism, mainly because of his lack to communicate. He was preverbal then and only knew the word “go” and now at 4.5 years old can talk in 4 word sentences. We’ve worked very hard with him at home and had to advocate on his behalf. When we got his level 3 diagnosis, he was about to be kicked out of preschool for being so deregulated and not anywhere close to potty trained (still working on it).
There is a school for kids with autism near our house that allowed us to send him during the school year, but it’s about $36k in tuition. My state gives out a developmentally need based scholarship for kids with autism, not based on finances, which allowed us to send him to this school for a year, but you needed a formal diagnosis. At the end of the year, we decided to get him enrolled full time to ABA (36 hours a week), which is stupidly expensive out of pocket (according to Google $120-$150 per hour). Our ABA is covered by insurance because of his formal diagnosis and allows our son to develop skills he needs to learn through 1-1 or very small group play. He’s thrived in this setting and it’s preparing him for when he eventually goes to kindergarten.
Since doing ABA, his speech therapies and understanding more about him and the way he thinks, he’s not the level 3 preverbal child any more. He’s probably somewhere between level 1 and level 2.
I do want to clarify that my husband and I do make good money and I know that you asked for the non-financial benefit. The services get more expensive the more help the kid needs. A diagnosis helps open the doors to be able to afford those extra services., In my pre school days, a teacher brought my parents in over concerns they had. They advised an assessment of sorts, something I only found out about recently, so my parents agreed and the findings showed that further assessment was needed. My parents, something my dad has admitted recently, decided to sit on it because they didn't really understand it. I can also safely assume, I feel, that they sat on it because it didn't seem necessary to them, as in the effort required on their part wasn't worth it. Their convenience over the concerns raised.
My parents were brought in again a couple of times, from memory, in later school years as well. It was swept under the rug. Their defense now is that I 'turned out alright'. They do not know the struggles I've had over the years and those I go through now. Being assessed and diagnosed early and any support that they could have potentially have gotten wouldn't have fixed everything. But it would have helped.
This is hardly the only thing that they approached like this. Things tend to flow into other areas. I do not sit here holding it against them, but I absolutely see their mistake(s) and the price I've paid for it and I will not purposefully repeat history with my own kids.
One of my kids has been diagnosed with level 3 autism. Severe. It has brought on a whole other level of challenge. Another is in the process but is less severe, so if they have autism it would be high functioning I'd say, and the other will very likely be assessed when the time comes as well for reasons that are obvious when you know the signs.
Our child with level 3 autism has been receiving support for a little bit now and I can absolutely see the difference.
With more severe cases, the benefits of a diagnosis (and where you go from there, of course) should be self explanatory. With less severe cases, I see it like this. They'll probably get by in life without it but that shouldn't be the benchmark. You should want your child to be the best version of themselves that they can be with the hand we have been drawn. And in the case of autism, it's something you ideally want to get on as early as possible. It's better to do just that rather than potentially regret it later down the line.
A deviation can just be a symptom as well. The point being that delayed speech can seem like a temporary problem. Once they can speak, the issue has gone, right? Are you sure about that?, Would you hesitaste to get your kid a diagnosis of diabetes or epilepsy? So why autism?, A diagnoses is not just about "records", It's also about knowing one's self... your son inevitably will feel "different" as he gets older and have no idea why. This happened to my daughter as she wasn't diagnosed until she was in 6th grade. She had a lot of social issues growing up, and felt like something was wrong with her. So much so... that she attempted suicide. Once she learned why she felt so out of place, she got so much better and accepted who she was.
My son has known since he was around 4/5, and grew up so much more confident and proud of himself. He wears autism like a badge of honor., Here's a non-financial benefit: Getting your child assessed and using that assessment to start doing what can be done will signal to your child later in life that you cared about them and did everything you could for them instead of ignoring the problem and hoping it would go away.
Here's another: It will help you understand the why of your child, too. Why do they dis like certain things and what can you do about it? Why do they like certain things so intensely and why that's okay., I live in Canada, and without a diagnosis you won’t get access to therapies that can help your child. You can pay out of pocket, we are still waiting for public support in that regard but we are lucky we have such comprehensive coverage for these things through my husband’s work… not everyone does.
Additionally, with a diagnosis schools are required to make accommodations for your child, without it they are not.
My son just turned 5, has a high IQ and is fully verbal with no delays. For him, his social skills are different than his peers, he needs a bit more time during transitions etc. He’s currently in preschool with no accommodations as we have just got his diagnosis. However for kindergarten he will, also as school becomes more demanding and social differences become more apparent as they get older, therapies and accommodations will be more significant.
So like others have said… the fear of a label is a you problem. There are many adults seeking out a diagnosis which provides validation and an understanding they didn’t have as children. We all want to support our children the best we can, however in our society to obtain the accommodations required for them to thrive require a diagnosis., There is no reason not to get an assessment. Autism is becoming more and more accepted here in the US. There will be a lot more stigma against your child for being thought of as NT yet lashing out at teachers or peers in the future rather than labling your son as autistic and getting him the help he needs. I really doubt that his only issue is speech if the topic of an autism evaluation has been discussed with your wife. Is he thriving academically and socially? Or does he simply recognize his letters and numbers? He's in preschool and preverbal according to your post. With your aversion to a diagnosis, I feel like you must be ignoring other classic signs of autism because you don't want this to be the truth. The older your child gets without help, the harder life will be for him. There are only benefits for getting your child the help they need as soon as possible., We tried to get our son diagnosed twice, at 2 and at 4. Both times were fobbed off by the NHS (we are in the UK). Since there is not too much support in the UK either way, I thought fine, we will just do our best - I am autistic myself and ended up fine (not sure about that any more).
My son is 9 now and it is only in the past year or so that I realised how badly masking affects him at school. It must be that with more time to sit down, more time to focus, learn, absorb information, everything gets too much. Teachers would tell me that yes, all the children have meltdowns after school. This is just gaslighting. We are trying to figure out how to make school easier for him and I truly think that if I understood autism better earlier, my son wouldn't have to suffer that much. And we wouldn't have to go through daily struggle either.
Autism is not just about social deficits. It is important to understand the reasons behind that - lagging emotional maturity, anxiety, constant suppression of impulses in public. Every child is different and they have different areas that cause dysregulation.
All of this backfires when they are in their safe place, home. These kids lack interoception, so they cannot really tell you that they were very dysregulated because there were a lot of children in the classroom. Or because there were too many things displayed on the walls causing overstimulation. The areas that cause issues can be identified with the appropriate professionals such as OTs or educational psychologists., Without diagnosis, my son would not have his IEP for school. When he had his normal preschool screening, he failed. I already had concerns about his speech, but then the preschool screening revealed other issues. It prompted a more thorough assessment through the school and he was originally not going to qualify for services because he was barely skimming by on their assessments. However, I knew he needed help. He was struggling with fine motor skills, echolalia, social skills.
Then the school offered us the option to have him tested for autism. I agreed and he received a school diagnosis for autism and got an IEP. Without the autism diagnosis, he wouldn't be getting speech therapy or other modifications in his class. He has difficulty even with these modifications, so I am sure he would be failing without them.
Personally, I'm not worried about a label because we don't discuss his autism with anybody who doesn't need to know. I want him to have the option to share with others if he chooses. I'm not going to broadcast his medical information to the world., It has been shown over and over that getting an early diagnosis and early intervention is incredibly helpful for, not only services but also, mental health. Kids are perceptive and know that they may feel “different” than their peers. Having a diagnosis that can be explained to them and discussed with them can help them know that they aren’t “broken”.
If your child has autism, they have it with or without a formal diagnosis. The diagnosis itself will just open more doors for your child to get the help they need and thrive., I was on the fence myself until I saw this TikTok:
https://m.youtube.com/shorts/93CQOGdk1PU?si=2nZKLoGEhhYoVHbu, I fought my husband for 6 years to get my stepson assessed. Two years later. I'm really glad he finally did. I wish we could have done it sooner. As your kids grow, new hurtles will be presented, you need this to be pre-established to get help, meds or extra counseling. Hormones will be rampant and bullies will bully., What would the benefits be of NOT getting a diagnosis? Frankly I can’t think of a single one.
Numerous benefits to having a diagnosis, including greater understanding of their needs.
If they don’t have autism, the assessment will not give them autism. I don’t understand the hesitation., At 3.5 it's too early to truly judge the challenges they'll face. My son is 5.5 and the challenges have increased with age and if he didn't have support he would be left behind. I was worried about the label too, but we only perceive it that way because of how we have been conditioned to think. Times have changed and kids are more open minded than i ever expected them to be. Sure youll get the odd awful person here and there but they arent worth the energy worrying about. The baggage is yours and you are passing the burden on.
I was diagnosed as an adult and I would not wish my school experience on anyone. Trying to navigate a system that is not built for you without support and expectations that you should be able to perform equally with the same infrastructure is devastating. I was labelled a trouble maker because I behaved differently, I struggled to make friends and was bullied for being weird and didn't know why. By high school I had severe mental health challenges and was self-harming. I've spent my adult life with crippling depression and co-morbid drug and alcohol abuse. At 38 I've only just managed to come out the other side with years of intense therapy and multiple stays in psych hospital/rehab, during which time I received my diagnosis. I now understand my brain and everything in my life makes sense, it's so incrediboy validating that there is a reason i struggled, its not because i am a failure or somehow less than others. I WISH I knew in school and feel like things might have been different if I had been diagnosed early. Im not naive enough to believe my life would have been easy and that i wouldnt still struggle with similar challenges, but i would have had more support and a framework within which to understand and develop myself. That's why I will do everything to make sure my son has all the support he needs and my younger daughter is on the waitlist to be assessed too., Yes 100% it will help you get the proper supports in place. It’s weird how are you poo pooing the financial benefits.
16% of people with autism are employed full time. Government benefits throughout life can play a significant factor in outcomes., I think it strongly depends on your country and perspectives and chances of getting the diagnosis at 3-5-7 yo.
In our country getting the official, not private diagnosis makes sense if the child has developmental delay that won't allow him to succeed in regular school without IEP. It can give the child some extra hours for exams and few other useful options. The easiest age to get the diagnosis is 4-5 years, and it's very unlikely that the child will get it and its benefits in his teens. However autism is considered a mental illness that limits the profession choice and minimizes chances to get the driving license, and the analogue of red pill content with stigmatization of almost everyone including ND people has gained a lot of popularity in the last years, even by the government. We chose not to get the official diagnosis for our son, just the private one, because he did not have any delays that would prevent him from doing well at school by the time he had to enter 1 grade. But you say that your son is not verbal at 3.5 - this is quite significant delay and I would definitely pursue evaluations in this case while doing at least 3 hours speech therapy a week - it's needed regardless of the diagnosis., I was standoffish getting my kid assessed, but realistically the assessment didn’t tell us anything we didn’t already know. It was nice to have a straight answer and not a ‘maybe’.
But there’s been a lot of helpful benefits, for example there’s a place where I am that helps him with certain needs, like swim lessons, chewy sticks, if we even needed a fence, or special door locks, and other things but so far they’ve helped me get him into a ‘spectrum gym’ and we are in the process of the swim lessons and another form of therapy.
Other then the extra benefits and the clarification I don’t think it’s important, Formal diagnosis opens up an entire world of support! I love my kid’s autism diagnosis.
She is who she is - a great kid- label or not. But the diagnosis meant that she got free physical therapy and social skills help at school that enabled her to play her peers. I just had her IEP meeting and the services she’s getting would be inaccessible or very expensive in the private market. Because she is an IEP student, she gets academic support in writing and math. She has access to summer camps tailored to her needs, sometimes for free., My son was misdiagnosed in kindergarten. I didn’t agree. I didn’t know it at the time but they never even tested him for autism. Even though I told them my concerns. I even submitted letters from his pediatricians, daycare provider and two different speech language pathologists that has the same concerns. They said his behaviors were due to his known adhd. I didn’t agree with them btw but he did so much better with the IEP.
Until he got older. As he got older it became more and more apparent how different he is from kids his age. He didn’t have problems breaking or adapting to routines. He wasn’t rigid. He didn’t have problems regulating his emotions. He struggled socially. He also had problems initiating tasks on his own. I had his pediatrician send a referral for testing. This was right before Covid. I was on a wait list for literally years. But the time he was scheduled and tested it was a month before he turned 16.
I wish I had him retested when he was younger. It would have opened opportunities for services for him. I have him in a vocational rehab program for teens with autism. He turns 18 this year. The class is to help them learn certain skills to be able to work. And it helps teach them what is and what is not acceptable in a work environment. He had an interview for his internship last week. He will also be getting a job coach as well.
I’m really hoping this program is successful but so far I still don’t think he can manage a job. I just signed him up for a social skills class for teens with autism through a psychologists office. I’m hoping this helps him also.
I can’t help but wonder if he would be better at those skills if I had him enrolled in services when he was younger. He also has a language disorder. He has a hard time expressing himself not only verbally but in writing. He was in speech therapy from before kindergarten to sometimes later in elementary school. His teachers felt he would get more benefit from staying in class than being pulled out. Basically saying his speech will continue to improve from interacting with his classmates.
His speech is better and he can have conversations and he can be understood. But it is apparent when you talk to him he doesn’t talk like other kids his age. I’m currently trying to get him back into speech therapy. Idk if his diagnosis will make it easier for me to get him in somewhere or not., Your kid sounds a bit like mine. His large "otherness" is a language delay (verbal but not fuller conversational at 5) but he also has limited interest in other humans, special interests, some stimming, lining up toys when younger, and some other tell-tales - assessment or not, he is most likely on the spectrum.
We stood on the same crossroads a couple of months ago, where the question came up whether or not to do a formal assessment. We too were worried about creating a record because where we live there are some jobs where people with diagnosis are excluded (police, military, firefighter, but potentially even mundane things like bus driver - nobody even seems to know for sure). Also, I have encountered exclusion and people just assuming things based on diagnosis during my own life so I know it's not ist a theoretical question.
I am very curious to read about the worth of the actual assessment content as well, as this is the one aspect that had us on going back and forth about what to do. For us, our experience with interventions hadn't exactly been stellar so we concluded chances were we were going to be disappointed again.
Since our son is in a private (parents-owned) pre-school and will go to elementary there we already know the school isn't insisting on a diagnosis. There is no ABA where we live and from all we could gather there aren't any extra therapies he could be getting. Disability payments seem unlike for his future and we can still get him assessed should his development point that way as he gets older.
So in the end there were very uncertain benefits with a formal diagnosis but a bunch of possible cons.
We decided not to have him assessed at this time but might re-consider as he gets older - which is a decision our ped and language therapists can get on board with. One reason for our decision was that we are finally getting a larger speech assessment, as well as an assessment by the special eds teacher at school. Adding the autism assessment on top of that would just have been too much for him., We do not use any financial benefits. What we do use is access to therapies (speech, OT, and Play.) In school his suspensions are one day instead of 3 day. He has an IEP so he is allowed to use fidgets in class. He’s also allowed to see the school psychologist more than most kids and has formed a huge bond with her. If needed he can have extra time to do tests (though he’s never needed it.) He has a band around the legs of his chair that he can kick when he has extra wiggles. He can’t be expelled from school because of his number of suspensions without first going through multiple IEP meetings and trying to meet his needs better. My son has a special rewards program in his class just for him to help with immediate rewards for good behavior. It’s also helped us help regulate him at home. He will soon have his own sensory room to help him regulate. We are able to let him have time with very minimal rules to help him unmask at home. We are able to explain to his sister why her brother has different rules than her and why he’s different. There’s many benefits to getting an assessment other than just financial. My son is 9 and level 1 with a high cognitive score. He still all of this and more. This is all just off the top of my head., We knew my son was behind in his milestones from doctor's visits since he was 1 year old. The assessments just let me know how to better support him from home and what areas I could focus on more. This is my first child with autism and all my other kids are NT, so I had no clue what was going on, but I knew early on that he was different. He has a lot of issues, too many to ignore., Some terrific points here. Parents are afraid of their child getting the autism label because autism is seen so negatively. But as your child gets older and peers start to notice more differences they will get a bunch of labels from them that are far more negative and hurtful. With an autism diagnosis at least more people might be compassionate., Your kinda proving the point of OP. You label it selfish not to get diagnosed, Why? but then double down on the benefits of being diagnosed gets you access to X!
I think what OP’s point is, is that does the diagnosis access/treatments actually benefit the child or are there alternatives routes.
What are the results vs un-diagnosed? What other options are there? It’s not like the Diagnosis actually heals or cures the child.
It just attaches the label, who does that benefit?
To say the label of Autism also doesn’t affect your child is ridiculous. There’s still a lot of stigma around it & it can make your child feel isolated (no matter how safe you make your home) labels changed peoples perception of themselves.
Just look at Bi-Polar, while it’s in a similar bracket with ADHD & Autism. (Tho very little support) People with Bi-Polar largely keep to themselves because of the judgments that come with it.
You live in a bubble if you don’t think your kid isn’t gonna get a hard time at some stage due to their Autism., [deleted], I have one reason why a diagnosis might not be helpful here in the UK, where support that you get after the diagnosis is minimal anyways.
I've known my son was autistic since he was 2. It was a struggle to get him diagnosed, NHS fobbed us off two times and the school would not notice anything apart from his hand flapping. We only got his diagnosis now that he is 9, mostly because now we realised he also has ADHD.
We would like to move him to an independent school and it would have been so straightforward before his diagnosis. His state school says he is working at an expected level, so all is great!
Now that we have the diagnosis - some schools won't even consider him (which is fine, they are probably not the right place then). With some schools it just gets trickier to get in: you have to submit a form a year in advance, go through some screenings etc., This made me tear up. I truly believe my sister is undiagnosed and I know she told herself things like this. If she had been diagnosed perhaps that would have helped her identify her differences and not blame herself., How can preparing your kid with labels & drugs be a better solution then teaching them how to deal with the adversity.
Are you gonna condone your child to that for their life rather then teaching them to deal with life’s challenges.
It’s such a backwards way of thinking!, It might be worth understanding what they are assessing during the assessment and why. Ultimately, SL difficulties are there because of some underlying cause (say, difficulty with mimicking) and that cause does not really go away when they reach the stage of being conversational. Speech evolves and gets better, but that underlying cause continues to exist and needs to be addressed still.
I found it helpful to understand how some underlying anxiety manifests, what is the impact of sensory issues. Our son masks heavily at school - the school never flagged anything (apart from his hand flapping). But then masking takes so much energy, especially as they are getting older and the gap between their peers is widening. We have nearly daily tantrums...
Our son was showing obvious signs at the age of 2, we tried to get a diagnosis a few times but were fobbed off by the nhs. We went for a private diagnosis at 9, mostly because of ADHD. But we are now pursuing OT and ed psych assessments to get the bigger picture of how autism actually affects him. Autism assessment itself is very deficit-based and is a bit depressing. But at the same time it helped us identify some areas we were not really paying attention to. Maybe familiarising yourself with the assessment schedule can be helpful., Because of an assessment and if the child is diagnosed, it opens many doors for early intervention. Early intervention can really help kids that are falling behind, no matter if they have autism or not. There are specific therapies that are geared towards kids with autism.
Doing nothing and burying your head in the sand because of a label, doesn’t get the kid the therapies they might need.
I never said that the label didn’t or won’t affect my child. The kids in our neighborhood and when we take him to parks and indoor playgrounds play with him like his peer. My son is still struggles and is learning how to play with others, social cues and communication because of his autism. The extra help he’s received so far in his life has been wonderful for his development. Also, my son is 4.5 yo. From what we know, he is blissfully unaware at this time about his autism., Wtf? The access to treatments and therapy ARE beneficial to the child. Full stop. These are not alternative facts.
Bipolar is not in the same category as Autism. Autism can not be cured or managed by a pill. It is not a hormonal imbalance or anything of that nature and every single kid on the spectrum has different triggers, obsessions, and symptoms than the next one. If you ignore autism, it's not just going to go away, you can not discipline it out of your child, if you do not get your child the help they need because you are scared of having an autistic child then yes, you are selfish., Because of his autism diagnosis my son got an IEP he otherwise wouldn’t That IEP has been a life saver., Let me cut off both your legs and then deny you a wheelchair or prosthetics.
Just deal with life’s challenges, No accommodations., As far as we (me, his dad, his teachers) are concerned we know for a fact that he is either autistic or "autistic personality traits", which is the wording for people that just don't make the formal diagnosis criteria. So whether he has it on paper or not he will grow up knowing he is different and to not have the expectations of being "normal" with all the making etc that comes with it. (Which is another very valid point pro diagnosis). Also he is not exactly the only ND in the family so we know what we are dealing with.
I really wish there were more therapeutic options for his speech but where we live there just aren't. It's all put on the parents. I even looked into private speech therapy but that doesn't seem to be a thing, at least for young children, either.
But luckily he is making progress steadily and from reading up on other late-talking ND kids' trajectory I am confident he will catch up eventually.
If a diagnosis would open up therapy or schooling options I'd probably take the risk of the label but since there aren't it's not worth taking even the small risk., [removed], PREACH 🙌🏻🙌🏻, Lol, Bi Polar is a mental disorder or ND issue in same way Autism & ADHD, it’s actual very common in Autistic kids & goes un-diagnosed in many cases!
Why, because no one what’s to call their kid bi polar and you get very little to no funding when it comes to BP., [deleted], [removed], “Sorry there are parents out here that want their kid not to struggle but instead thrive, regardless of their autism”
Are you saying if a parent pursues a diagnosis it means they want their kid to struggle or in some way this hinders a child’s development/progress? Or is this worded wrong?
I don’t see how having a diagnosis automatically means the child would struggle more? I certainly don’t think a diagnosis alone solves everything, but it certainly opens the door to better access to resources for most. And honestly you can decide whether to share it with anyone or not. For pretty much most of us this early intervention isn’t accessible without a formal diagnosis. It’s been shown through scientific studies that early intervention increases success rates and ultimately independence. Which I would think is pretty much all of our goals as parents of Autism- Not to make your child any specific way, but to help them develop skills to understand the environment they’re in and how they can make a life for themselves, whatever that may be.
Also one thing that stuck out to me when we got my son’s diagnosis is the Dr mentioned how helpful this diagnosis will be when he’s an adult. Should he ever lead a somewhat independent life, it will help him with all his relationships. Relationships are complicated and if you know about yourself and how your brain works, it’s going to be a huge advantage when you’re in conflict or general relationship upkeep., What alternative options are you talking about? Do you even know what you’re talking about when you talk about therapies? There’s nothing wrong with needing help by professionals.
Also, majority of parents in this world want their children to thrive, which is why ignoring signs and avoiding an assessment just so the kid doesn’t have a label is imo irresponsible. It’s solely there to help the child that needs it., You seem to have a chip on your shoulder regarding bi-polar. I know exactly what bi-polar means, it's also not usually diagnosed until teens or young adult years. I have several Bipolar friends and in-laws. Bipolar disorder can be managed with medication unlike autism or dyslexia(another ND issue). Therapy can also help to teach you skills to manage Bipolar disorder. Bipolar effects 1 in 10 adults with autism. My 5yr old level 3 autistic son suffers from anxiety and ocd tendencies which we treat with magnesium(recommended by his doctor). Many comorbidities that can go along with autism can actually be treated or managed with medication, autism itself can not. Bipolar issues do not have anything to do with this topic the OP mentioned. If you are not seeking help for your child's Bipolar disorder because you don't like the label, you are just as selfish as if you don't want to have your autistic child labeled and refuse to get them the help they need. Being hung up on a label is the most ridiculous thing to me. Labels help one understand their own unique situation and open the doors to seeking the help they need to succeed., I stick by my meaning of brining this up that accommodations can not be given without a diagnosis., I think you’d have a hard time. One that would be made easier by having some supports tailored to your needs., Finally someone who agrees that bipolar and Autism can co-exist.
If autism can’t be medicated then why are most parents medicating their kids?
I have no chip on my shoulder, I just think there is still a tone of work to be done on how we understand and best treat ND., [deleted], Only if I’m trying to walk in your shoes!, Lmao what? No one that I saw said they couldn't co exist. They are not the same thing.
>If autism can’t be medicated then why are most parents medicating their kids?
No one is medicating their kid FOR autism. There is no medication that treats autism. My son is "medicated" for PICA, he takes an iron supplement, he had PICA because he has texture issues with food and won't eat meat. Him taking iron does not mean that I'm medicating him for autism just because he is autistic. Autistic kids receive medication for a variety of reasons, just like non-autistic kids do. Some parents in this sub have children with epilepsy, comorbid with their autism. Others have kids with autism and ADHD, or depression or PDA or anxiety, the list goes on and on.
You definitely have a chip on your shoulder about bipolar disorder and "labels"., It’s never a full on blessing but it allows accommodations for the rest of their life. Period., [deleted], Nope I can’t fathom that because it doesn’t exist. By law accommodations have to be made. You may have to fight for them but by law in the US and in Most of the world accommodations have to be made and that cannot happen without a diagnosis., [deleted], I never said it was easy to get said accommodations but legally they have to give them in many countries. You may have to fight and fight hard but legally they do., [deleted], “In Mongolia, public schools are required by law to provide accommodations for children with autism and other disabilities. These accommodations are typically outlined in either a 504 plan or an Individualized Education Program (IEP). These plans ensure that students receive the necessary support to access education effectively”
Hmmm seems like they have to offer accommodations by law in Mongolia., [deleted], How much detail do you want me to go into? I’m sorry I proved you wrong. I’m sorry I hurt your feelings. But by law most places have to give accommodations and they cannot do that without a diagnosis. That’s my entire point. I get it’s not always easy. But by law it is there.
The Mongolian government through its ministry of education monitors compliance. They periodically do inspections and evaluations on schools to make sure they are following laws. Schools are legally obligated to ahere to these laws. Teachers also get training on inclusion. Parents are encouraged to be involved and help enforce the laws. Parents are encouraged to report any school not following the laws. Those reports trigger investigations., I never said it was easy or that you wouldn’t have to fight. I said legally they are required too., [deleted], I never said I didn’t have to fight or that it was easy. What you’re missing in what I am saying is that it’s illegal to not provide accommodations and that you can’t get those without a diagnosis. Anything else you are adding to what I am saying. I know it’s hard. I know it’s harder in some areas. But it is illegal not too.
|
Is getting a level assigned important?
|
My son is 10 and is verbal. He’s got a low-average IQ, but doesn’t need any academic supports right now in order to keep up other than working super hard on homework and repetition of concepts at home. He is mainstreamed without a 1:1 para, but he benefits greatly from the classroom para and does get pulled out once per week for speech and social skills. He has trouble with anxiety and being embarrassed easily, and doesn’t have a good understanding of social cues/nuance, especially as puberty is approaching. Helping with social and emotional needs are the biggest needs he has right now. He’s never been assigned a “level”, as far as I know.
However, I’m trying to get us ready for middle school and we’ve been managing more meltdowns at home (they are now happening about once every two months), so I’m thinking more critically about his needs and trying to prepare us if I need to advocate for more supports.
Is getting a “level” assigned important to getting needs met later? Am I doing him a disservice by not asking for more information on his diagnosis? He was diagnosed at 2, and we did a TON of intervention but haven’t done any outside services since Covid. He has a pediatrician but not a developmental pediatrician or specialist. What am I missing in terms of labeling with levels?
|
No levels are truly meaningless
As he enters adulthood the only differention in most states are intellectual disability or not. I live in mass and the state only covers housing if they have ID for example, The only benefits I see to the levels are as a shorthand for clinicians to understand how much support an individual may need. Anything more than that I feel they become limiting for the individual. Also levels can change depending upon circumstances. If meltdowns are becoming more frequent then it may be helpful to seek out a bcba and see if adaptive equipment like a compression vest or something similar would be helpful., From what I understand, the levels are specified to determine the level of support the child will likely need at home/educational setting/therapies., I was told it usually only matters for early intervention. I could be wrong and they could but like toddlers with level 2 and 3 is so they are able to get assessed at least where I am.
I wouldn't dwell too much on the level, My son was diagnosed yesterday at level 2. He’s three years old, smart, hardly ever melts down, eats a good variety of food for his age, and is speech delayed but speaks. He can make requests and say no if he doesn’t want something. I asked the psychologist what would constitute level 1 supports versus level 2. She basically said “people like the Elon Musks of the world”. I interpreted that as either late diagnosed or having very little in the way of delays. TBH I wouldn’t want my kid to be an Elon Musk because I think he’s a jerk lol.
Honestly, levels can be arbitrary and change over time. And it can depend on who is performing the assessment. I’ve read here about children who aren’t talking and diagnosed before 2 still getting level 1 support needs even though I figure most kids diagnosed at a young age would be level 2. They’re still growing and learning. Beats me., Levels do mean something, and can be helpful, but they aren’t always important. Our autism specialist who diagnosed my son doesn’t use number levels, only words. Mild to moderate, moderate to severe, and severe. My son was diagnosed with mild to moderate autism. When you are dealing with schools or programs, I would use the official wording, and say “that means he’s really good at this thing, or has a hard time with that”. Everyone on the spectrum is different, so you have to let them know certain things that are relevant to your child. If he isn’t getting enough help, get an IEP, or moderate it if he already has one. We are our own childs best advocates, so we have to stand up and say “This is important, it’s a need for my child”. If the answers you get still aren’t enough, look at others schools that CAN offer what he needs., No levels are truly meaningless
As he enters adulthood the only differention in most states are intellectual disability or not. I live in mass and the state only covers housing if they have ID for example, The only benefits I see to the levels are as a shorthand for clinicians to understand how much support an individual may need. Anything more than that I feel they become limiting for the individual. Also levels can change depending upon circumstances. If meltdowns are becoming more frequent then it may be helpful to seek out a bcba and see if adaptive equipment like a compression vest or something similar would be helpful., From what I understand, the levels are specified to determine the level of support the child will likely need at home/educational setting/therapies., I was told it usually only matters for early intervention. I could be wrong and they could but like toddlers with level 2 and 3 is so they are able to get assessed at least where I am.
I wouldn't dwell too much on the level, My son was diagnosed yesterday at level 2. He’s three years old, smart, hardly ever melts down, eats a good variety of food for his age, and is speech delayed but speaks. He can make requests and say no if he doesn’t want something. I asked the psychologist what would constitute level 1 supports versus level 2. She basically said “people like the Elon Musks of the world”. I interpreted that as either late diagnosed or having very little in the way of delays. TBH I wouldn’t want my kid to be an Elon Musk because I think he’s a jerk lol.
Honestly, levels can be arbitrary and change over time. And it can depend on who is performing the assessment. I’ve read here about children who aren’t talking and diagnosed before 2 still getting level 1 support needs even though I figure most kids diagnosed at a young age would be level 2. They’re still growing and learning. Beats me., Levels do mean something, and can be helpful, but they aren’t always important. Our autism specialist who diagnosed my son doesn’t use number levels, only words. Mild to moderate, moderate to severe, and severe. My son was diagnosed with mild to moderate autism. When you are dealing with schools or programs, I would use the official wording, and say “that means he’s really good at this thing, or has a hard time with that”. Everyone on the spectrum is different, so you have to let them know certain things that are relevant to your child. If he isn’t getting enough help, get an IEP, or moderate it if he already has one. We are our own childs best advocates, so we have to stand up and say “This is important, it’s a need for my child”. If the answers you get still aren’t enough, look at others schools that CAN offer what he needs., No levels are truly meaningless
As he enters adulthood the only differention in most states are intellectual disability or not. I live in mass and the state only covers housing if they have ID for example, The only benefits I see to the levels are as a shorthand for clinicians to understand how much support an individual may need. Anything more than that I feel they become limiting for the individual. Also levels can change depending upon circumstances. If meltdowns are becoming more frequent then it may be helpful to seek out a bcba and see if adaptive equipment like a compression vest or something similar would be helpful., From what I understand, the levels are specified to determine the level of support the child will likely need at home/educational setting/therapies., I was told it usually only matters for early intervention. I could be wrong and they could but like toddlers with level 2 and 3 is so they are able to get assessed at least where I am.
I wouldn't dwell too much on the level, My son was diagnosed yesterday at level 2. He’s three years old, smart, hardly ever melts down, eats a good variety of food for his age, and is speech delayed but speaks. He can make requests and say no if he doesn’t want something. I asked the psychologist what would constitute level 1 supports versus level 2. She basically said “people like the Elon Musks of the world”. I interpreted that as either late diagnosed or having very little in the way of delays. TBH I wouldn’t want my kid to be an Elon Musk because I think he’s a jerk lol.
Honestly, levels can be arbitrary and change over time. And it can depend on who is performing the assessment. I’ve read here about children who aren’t talking and diagnosed before 2 still getting level 1 support needs even though I figure most kids diagnosed at a young age would be level 2. They’re still growing and learning. Beats me., Levels do mean something, and can be helpful, but they aren’t always important. Our autism specialist who diagnosed my son doesn’t use number levels, only words. Mild to moderate, moderate to severe, and severe. My son was diagnosed with mild to moderate autism. When you are dealing with schools or programs, I would use the official wording, and say “that means he’s really good at this thing, or has a hard time with that”. Everyone on the spectrum is different, so you have to let them know certain things that are relevant to your child. If he isn’t getting enough help, get an IEP, or moderate it if he already has one. We are our own childs best advocates, so we have to stand up and say “This is important, it’s a need for my child”. If the answers you get still aren’t enough, look at others schools that CAN offer what he needs., No levels are truly meaningless
As he enters adulthood the only differention in most states are intellectual disability or not. I live in mass and the state only covers housing if they have ID for example, The only benefits I see to the levels are as a shorthand for clinicians to understand how much support an individual may need. Anything more than that I feel they become limiting for the individual. Also levels can change depending upon circumstances. If meltdowns are becoming more frequent then it may be helpful to seek out a bcba and see if adaptive equipment like a compression vest or something similar would be helpful., From what I understand, the levels are specified to determine the level of support the child will likely need at home/educational setting/therapies., I was told it usually only matters for early intervention. I could be wrong and they could but like toddlers with level 2 and 3 is so they are able to get assessed at least where I am.
I wouldn't dwell too much on the level, My son was diagnosed yesterday at level 2. He’s three years old, smart, hardly ever melts down, eats a good variety of food for his age, and is speech delayed but speaks. He can make requests and say no if he doesn’t want something. I asked the psychologist what would constitute level 1 supports versus level 2. She basically said “people like the Elon Musks of the world”. I interpreted that as either late diagnosed or having very little in the way of delays. TBH I wouldn’t want my kid to be an Elon Musk because I think he’s a jerk lol.
Honestly, levels can be arbitrary and change over time. And it can depend on who is performing the assessment. I’ve read here about children who aren’t talking and diagnosed before 2 still getting level 1 support needs even though I figure most kids diagnosed at a young age would be level 2. They’re still growing and learning. Beats me., Levels do mean something, and can be helpful, but they aren’t always important. Our autism specialist who diagnosed my son doesn’t use number levels, only words. Mild to moderate, moderate to severe, and severe. My son was diagnosed with mild to moderate autism. When you are dealing with schools or programs, I would use the official wording, and say “that means he’s really good at this thing, or has a hard time with that”. Everyone on the spectrum is different, so you have to let them know certain things that are relevant to your child. If he isn’t getting enough help, get an IEP, or moderate it if he already has one. We are our own childs best advocates, so we have to stand up and say “This is important, it’s a need for my child”. If the answers you get still aren’t enough, look at others schools that CAN offer what he needs.
|
Is it all downhill from here?
|
Hello all you parents of autism!
I'm so concerned about this thing and it has been really killing me for the past few weeks. So my son is on the spectrum, he just turned 2. We've noticed it at about 1 year and 8 months. In Romania, the child psychiatrists we saw so far, won't diagnose our kid, because in their view, he is too young.
But as a desperate father, I did my fair share of research and took the time to complete some tests myself. Results have always been medium or severe. But this pains me so much, because I'm not sure I'm doing it right.
After many failed attempts, we convinced someone from a local center to do 1 hour of ABA therapy in our home each working day.
We're waiting for another appointment in May for another evaluation.
But it seems to me like he started regressing. We were always told by professionals to keep him from his repetitive cycles. To distract or redirect him into functional playing or activities. And we managed to do that for some time, but recently the repetitions have started to accentuate.
To name a few: he doesn't play with cars, just spins their wheels, finds circular objects to spin on the floor to no end, hits his head occasionally and every time he is sad, frustrated or angry, he gets angry very easily even if me and my wife talk to each other for a few seconds (he doesn't allow us, because we need to do repeat what he wants constantly), he flaps his arm when music starts, and a whole lot of other things. On top of all that we recently became more aggressive.
He never spoke a word, just random repetitive sillables. He can't do O, or U, or I, just A and E sounds.
I've been wondering lately... is this it? Is this all we're going to get? Should I just accept that my son will never speak? I know he understands simple things, because he acts in ways that it seems he does or points to things, or matches things. But is this all we can expect? Have any of your own started to speak eventually? Is it normal for 24 months old?
I'm looking for a glimmer of hope... but I'm feeling defeated and hopeless...
|
24 months is so young! my daughter didn’t speak a word between 14m and 2.5 (she had a regression at 14m). at 2.5 she randomly sang the alphabet, and now, at almost 3.5, though not conversational (yet!), she is semi-verbal and has attempted to be conversational a few times.
keep getting him support and you will likely see an improvement!, In our case it has gotten better. My daughter didn’t say her first word until 2.5. Sign language helped us a lot. Now at 4 she is finally starting to say phrases. She is definitely behind her peers, but she is making progress., There’s still a lot of time for communication to develop. At 3 my son did not speak other than a handful of motivating words and some echolalia. He is 5 1/2 now and he’s not fully conversational, but he’s getting there. We’re able to understand each other and he can communicate his needs. It’s been a slow, slow, slow, road and most of the progress has happened over the past year or so. Lately he’s really into words that rhyme. He’s struggling with pronouns so he’ll say things like “it’s your turn” when he means “it’s my turn” but he’s getting better at catching those mistakes.
Your son may or may not speak, but he can still learn to communicate. And it sounds like from some of the behaviors you’re describing, that he’s already doing that! Even things like getting upset when mom and dad aren’t doing what he wants, are attempts at communication. I think you’re on the right track. Keep working at it!, He is way too young to determine what the future will hold. You should always have hope. My son is 18 and will likely never speak, but I am still hopeful. His vocalizations have become a lot more complex the last 2 years. They are starting to sound conversational and he initiates a back and forth with me. We are also in the process of getting him an AAC device so that we can try to have him communicate with that.
Those repetitive behaviors are stims. You don't have to stop him from stimming unless he is hurting himself or others or causing damage to things. 20 years ago the advice was to interrupt stims, but the mindset now is to allow them unless they are causing harm. You can also try to show him how to play functionally, but stopping his stimming is sure to frustrate him. He does those "repetitive cycles" to keep himself regulated which should help him stay calm. If he has stims that upset him, those are the ones to redirect. When my boy was small, I used to do his repetitive behaviors with him (he loved that) and it helped me to connect with him. I think it made him more inclined to let me show him functional play while we were also doing his stims. He still loves spinning wheels...he spins bowls and plates...and he spins himself! He never gets dizzy but I do just watching him., I’m sorry and I can really feel your pain. Keep hope, in the short term there is reason for hope, many stories of kids making growth and I wouldn’t be surprised if you see that too. In either case long term I have reasons for hope. Science is moving at a crazy pace now, I see new studies and treatments frequently.
The whole way we approach Autism is changing I think. Just give it a few years and I think you see hope long term too., I'm curious to know why the paediatrician has recommended you redirect him from stimming behaviours. My son loves spinning wheels. There's still plenty of ways you can engage with them and lots of language you can use while they're stimming. For us it's only gotten better since two. At two he had maybe one or two words. He is nearly two and a half and must have over 50 by now- can count to ten, label all the shapes, colours, is putting two words together and has plenty of verbs too. Always assume capability is my motto from now on., Repetitive behavior is called stimming. Preventing stims that aren't hurting children is an outdated practice, because it's harmful. We all stim sometimes, for example by clicking a ballpoint pen or shaking our leg, but autistic people do it more often. It's a way for them to self-regulate and process the world around them. If your son is stimming more when he's feeling sad or angry, he might be more stressed in general. Stopping his stims prevents him from regulating his emotions on his own, so externalizing behavior like aggression can go up.
I've had students who were completely non-speaking at age 6 and started talking. I've had students who didn't communicate at all learn to use an aac device at 10 years old. Others have started talking around age 3 or 4, before I ever met them, and are doing really well.
I work with children with intellectual disability and autism, at your son's age it's near impossible to tell wether he has an intellectual disability. He might have a speech delay and start talking soon. He might be able to communicate with an aac device, or sign language, or another way that works for him.
Pointing is a great sign for communication, it's a skill many of my students don't have - it means he understands that he can direct your attention, and that you are able to follow his gaze. That's the biggest hurdle many autistic children have communicating: understanding that other people understand them. You can try some simple signs or picture cards for communication - see wether he copies them or is able to point to them. If he's good at matching, I'd start out with picture cards. Getting some basic communication going tends to cut down on frustration as well., The truth is no one knows. People can swing either way in their development, there are too many genetic and environmental factors for one answer. My child was diagnosed at two and, while they now have much better language skills after initially losing all language, they are still minimally verbal. They did used to just make rhythmic sounds similar to what you’re describing and now can make requests for what they want, often with single words but also some phrases. My child has been in public schools education programs since 3yo and I think being around peers and teachers besides just his family has helped a lot in the progress that they have made. Whether or not your child also has intellectual disability will probably factor in a lot into the arc and speed of their growth trajectory., 24 months is so young, he’s still a baby! It’s great though that you were monitoring him and found out that early. I would recommend getting him a speech therapist as well. There is a lot of development going on in these early years and we started to see some good progress after 3,5yrs. Also the development in our children isn’t linear so it’s very common to see some fast progress in something, then plateau, maybe some regression, small progress and so on. My son is now 4,5 and he’s nothing like he was at 2. Do the best for your son and be optimistic!, Buy the books, more than words, an early start for your child with autism.
Look into DIR Floortime on Google.
Look up agents of speech on YouTube
Copy ms Rachel of of YouTube when interacting with him
Use prompts to get him to speak, but make it fun.
For example, swing him in a big throw blanket, stop and say swing, do that a few times and the don’t swing and don’t say swing and see if he looks at you and says what the heck why aren’t you swinging. Wait for him to make a sound or look in your direction and say swing.
Their brains are the most elastic right now, so I am a big supporter of early intervention instead of ohhhh they’re too young.
Get into speech therapy,
Serve a wide variety of foods. DM me if you have any questions, we are seeing some progress with our son but we are on top of him and playing with him all the time. Our house is a disaster but my son is getting therapy from his parents
Even if your son is not on the spectrum, these resources are great.
Buy him a mr potato head to learn body parts while you sit at a table and you hold the body part and name them together.
Get a tot tube and put shapes down it.
Read him books every single night before bed to try and have language before sleep to commit to long term memory, Thank you so much! This is giving me so much hope! That is so good to hear about your daughter and I'm so happy for you!
Hope is really all I have left. And if I lose it, I'll have nothing, just sadness.
I always dreamt of playing tennis and basketball with my son, going on bike rides together, sharing jokes, meeting his first girlfriend, having a conversation regarding anything, doing pros and cons, trying to pass on to him my experience so that he has a reference on how to handle specific situations. I dreamt of us taking up skiing lessons together, swimming together and having fun in the water, laughing, crying, giving him emotional support in tough situations.
And one day maybe witnessing his wedding while bursting with joy.
And it always hits me like a hard stone: is this all they're going to be? Dreams? I wish I could at least have time to do more research. I wish someone would just sit with him for a few hours in the weekend, so that we can get better at this autism subject., I'm so happy for you and your daughter! I can only hope this for my son too. Wish there was a way to know at least if what we're doing is the right thing., Thank you for the insightful response!
It is so frustrating not knowing if we're doing the right thing, and finding out that putting our trust in the only people that should shed some light on our situation (the specialists/doctors), is wrong.
I'm not sure if Romania is just far behind on the subject or if our medical approaches are just different.
But I will challenge this the next time I hear it from them and try to get an explanation.
It's a never ending confusion and unfortunately we lack the time to do a lot of research. We need to work in order to be able to pay for therapy and to provide my son with everything he needs and our time is spent mostly on work, caregiving and a little sleep in order to charge our batteries just a bit to get ready for the next day.
We feel like robots, but our needs don't matter anymore, cause we love our boy so much., Thank you so much for the encouragement!
I was always a person which does everything in my power to understand a situation or problem in other to come up with the best solution and fix it.
But in this I feel so powerless. People don't share where I'm from, there's no support groups, and I think in this situation the spectrum mommies and daddies would benefit so much by talking to each other and sharing their experience and coming up with solutions together.
What I think makes sense for my kid might not always be the best approach, and I'd like so much to be challenged as to why it's not ideal. Or told that someone else is doing the same and it works.
We feel so alone and in the dark, and it hurts so much., Thank you for the kind response!
Whether it was the child psychiatrist or therapist, the advice was always to stop him from doing it. I saw the word "stim" a few times while online doing research. But mostly it wasn't described by parents as something negative. So I thought that știmming might be something else, because I always got the message from specialists that obsessive repetition (as they call it) is something negative. Now I start to wonder too why they say this...
I'm starting to wonder if in my country (Romania), the perceived solution is to "force" the child out of autism. Now I'm not sure if stopping him is a good thing or a bad thing.
We were always told as children firmly what to do and not to do, by our parents. And there was nothing wrong with that. It helped us keep boundaries until we were old enough to understand why it was necessary.
But it pains so much not knowing if us stopping his repetitions/stimming, is affecting him negatively or positively in the long run.
It is so confusing, as in the US they are not discouraged, while over here they are. And I'd like to see all perspectives before making a decision. But families which document their child's autism online are mostly from the US, no European channels.
I would do anything to help him improve even if my heart is aching. But I would NEVER want to hurt him, even if it's just mentally 😭, It could be that they are behind...or it could just be a difference in preference.
​
Here are a few articles that may be helpful:
[Children's Hospital of Philadelphia](https://www.research.chop.edu/car-autism-roadmap/stimming-what-is-it-and-does-it-matter)
[Child Mind Institute](https://childmind.org/article/autism-and-stimming/)
[Psychiatry.org](https://www.psychiatry.org/news-room/apa-blogs/understand-stimming-repetitive-behaviors-purpose)
This one may help guide you on how to replace a stim, or reduce a stim, if it is necessary for safety or progress:
[Watson Institute](https://www.thewatsoninstitute.org/watson-life-resources/situation/replacement-behaviors-vocal-motor-self-stimulation/)
Here is a link to a youtube video that shows how to teach functional play: [Functional Play](https://www.youtube.com/watch?v=RLGDUE5Ek6o)
If your child doesn't yet imitate you can do "hand over hand" (using your hand to gently control their hand) to help them do what you are asking.
I hope the links all work for you, if not I can try to screen shot the info for you., 24 months is so young! my daughter didn’t speak a word between 14m and 2.5 (she had a regression at 14m). at 2.5 she randomly sang the alphabet, and now, at almost 3.5, though not conversational (yet!), she is semi-verbal and has attempted to be conversational a few times.
keep getting him support and you will likely see an improvement!, In our case it has gotten better. My daughter didn’t say her first word until 2.5. Sign language helped us a lot. Now at 4 she is finally starting to say phrases. She is definitely behind her peers, but she is making progress., There’s still a lot of time for communication to develop. At 3 my son did not speak other than a handful of motivating words and some echolalia. He is 5 1/2 now and he’s not fully conversational, but he’s getting there. We’re able to understand each other and he can communicate his needs. It’s been a slow, slow, slow, road and most of the progress has happened over the past year or so. Lately he’s really into words that rhyme. He’s struggling with pronouns so he’ll say things like “it’s your turn” when he means “it’s my turn” but he’s getting better at catching those mistakes.
Your son may or may not speak, but he can still learn to communicate. And it sounds like from some of the behaviors you’re describing, that he’s already doing that! Even things like getting upset when mom and dad aren’t doing what he wants, are attempts at communication. I think you’re on the right track. Keep working at it!, He is way too young to determine what the future will hold. You should always have hope. My son is 18 and will likely never speak, but I am still hopeful. His vocalizations have become a lot more complex the last 2 years. They are starting to sound conversational and he initiates a back and forth with me. We are also in the process of getting him an AAC device so that we can try to have him communicate with that.
Those repetitive behaviors are stims. You don't have to stop him from stimming unless he is hurting himself or others or causing damage to things. 20 years ago the advice was to interrupt stims, but the mindset now is to allow them unless they are causing harm. You can also try to show him how to play functionally, but stopping his stimming is sure to frustrate him. He does those "repetitive cycles" to keep himself regulated which should help him stay calm. If he has stims that upset him, those are the ones to redirect. When my boy was small, I used to do his repetitive behaviors with him (he loved that) and it helped me to connect with him. I think it made him more inclined to let me show him functional play while we were also doing his stims. He still loves spinning wheels...he spins bowls and plates...and he spins himself! He never gets dizzy but I do just watching him., I’m sorry and I can really feel your pain. Keep hope, in the short term there is reason for hope, many stories of kids making growth and I wouldn’t be surprised if you see that too. In either case long term I have reasons for hope. Science is moving at a crazy pace now, I see new studies and treatments frequently.
The whole way we approach Autism is changing I think. Just give it a few years and I think you see hope long term too., I'm curious to know why the paediatrician has recommended you redirect him from stimming behaviours. My son loves spinning wheels. There's still plenty of ways you can engage with them and lots of language you can use while they're stimming. For us it's only gotten better since two. At two he had maybe one or two words. He is nearly two and a half and must have over 50 by now- can count to ten, label all the shapes, colours, is putting two words together and has plenty of verbs too. Always assume capability is my motto from now on., Repetitive behavior is called stimming. Preventing stims that aren't hurting children is an outdated practice, because it's harmful. We all stim sometimes, for example by clicking a ballpoint pen or shaking our leg, but autistic people do it more often. It's a way for them to self-regulate and process the world around them. If your son is stimming more when he's feeling sad or angry, he might be more stressed in general. Stopping his stims prevents him from regulating his emotions on his own, so externalizing behavior like aggression can go up.
I've had students who were completely non-speaking at age 6 and started talking. I've had students who didn't communicate at all learn to use an aac device at 10 years old. Others have started talking around age 3 or 4, before I ever met them, and are doing really well.
I work with children with intellectual disability and autism, at your son's age it's near impossible to tell wether he has an intellectual disability. He might have a speech delay and start talking soon. He might be able to communicate with an aac device, or sign language, or another way that works for him.
Pointing is a great sign for communication, it's a skill many of my students don't have - it means he understands that he can direct your attention, and that you are able to follow his gaze. That's the biggest hurdle many autistic children have communicating: understanding that other people understand them. You can try some simple signs or picture cards for communication - see wether he copies them or is able to point to them. If he's good at matching, I'd start out with picture cards. Getting some basic communication going tends to cut down on frustration as well., The truth is no one knows. People can swing either way in their development, there are too many genetic and environmental factors for one answer. My child was diagnosed at two and, while they now have much better language skills after initially losing all language, they are still minimally verbal. They did used to just make rhythmic sounds similar to what you’re describing and now can make requests for what they want, often with single words but also some phrases. My child has been in public schools education programs since 3yo and I think being around peers and teachers besides just his family has helped a lot in the progress that they have made. Whether or not your child also has intellectual disability will probably factor in a lot into the arc and speed of their growth trajectory., 24 months is so young, he’s still a baby! It’s great though that you were monitoring him and found out that early. I would recommend getting him a speech therapist as well. There is a lot of development going on in these early years and we started to see some good progress after 3,5yrs. Also the development in our children isn’t linear so it’s very common to see some fast progress in something, then plateau, maybe some regression, small progress and so on. My son is now 4,5 and he’s nothing like he was at 2. Do the best for your son and be optimistic!, Buy the books, more than words, an early start for your child with autism.
Look into DIR Floortime on Google.
Look up agents of speech on YouTube
Copy ms Rachel of of YouTube when interacting with him
Use prompts to get him to speak, but make it fun.
For example, swing him in a big throw blanket, stop and say swing, do that a few times and the don’t swing and don’t say swing and see if he looks at you and says what the heck why aren’t you swinging. Wait for him to make a sound or look in your direction and say swing.
Their brains are the most elastic right now, so I am a big supporter of early intervention instead of ohhhh they’re too young.
Get into speech therapy,
Serve a wide variety of foods. DM me if you have any questions, we are seeing some progress with our son but we are on top of him and playing with him all the time. Our house is a disaster but my son is getting therapy from his parents
Even if your son is not on the spectrum, these resources are great.
Buy him a mr potato head to learn body parts while you sit at a table and you hold the body part and name them together.
Get a tot tube and put shapes down it.
Read him books every single night before bed to try and have language before sleep to commit to long term memory, Thank you so much! This is giving me so much hope! That is so good to hear about your daughter and I'm so happy for you!
Hope is really all I have left. And if I lose it, I'll have nothing, just sadness.
I always dreamt of playing tennis and basketball with my son, going on bike rides together, sharing jokes, meeting his first girlfriend, having a conversation regarding anything, doing pros and cons, trying to pass on to him my experience so that he has a reference on how to handle specific situations. I dreamt of us taking up skiing lessons together, swimming together and having fun in the water, laughing, crying, giving him emotional support in tough situations.
And one day maybe witnessing his wedding while bursting with joy.
And it always hits me like a hard stone: is this all they're going to be? Dreams? I wish I could at least have time to do more research. I wish someone would just sit with him for a few hours in the weekend, so that we can get better at this autism subject., I'm so happy for you and your daughter! I can only hope this for my son too. Wish there was a way to know at least if what we're doing is the right thing., Thank you for the insightful response!
It is so frustrating not knowing if we're doing the right thing, and finding out that putting our trust in the only people that should shed some light on our situation (the specialists/doctors), is wrong.
I'm not sure if Romania is just far behind on the subject or if our medical approaches are just different.
But I will challenge this the next time I hear it from them and try to get an explanation.
It's a never ending confusion and unfortunately we lack the time to do a lot of research. We need to work in order to be able to pay for therapy and to provide my son with everything he needs and our time is spent mostly on work, caregiving and a little sleep in order to charge our batteries just a bit to get ready for the next day.
We feel like robots, but our needs don't matter anymore, cause we love our boy so much., Thank you so much for the encouragement!
I was always a person which does everything in my power to understand a situation or problem in other to come up with the best solution and fix it.
But in this I feel so powerless. People don't share where I'm from, there's no support groups, and I think in this situation the spectrum mommies and daddies would benefit so much by talking to each other and sharing their experience and coming up with solutions together.
What I think makes sense for my kid might not always be the best approach, and I'd like so much to be challenged as to why it's not ideal. Or told that someone else is doing the same and it works.
We feel so alone and in the dark, and it hurts so much., Thank you for the kind response!
Whether it was the child psychiatrist or therapist, the advice was always to stop him from doing it. I saw the word "stim" a few times while online doing research. But mostly it wasn't described by parents as something negative. So I thought that știmming might be something else, because I always got the message from specialists that obsessive repetition (as they call it) is something negative. Now I start to wonder too why they say this...
I'm starting to wonder if in my country (Romania), the perceived solution is to "force" the child out of autism. Now I'm not sure if stopping him is a good thing or a bad thing.
We were always told as children firmly what to do and not to do, by our parents. And there was nothing wrong with that. It helped us keep boundaries until we were old enough to understand why it was necessary.
But it pains so much not knowing if us stopping his repetitions/stimming, is affecting him negatively or positively in the long run.
It is so confusing, as in the US they are not discouraged, while over here they are. And I'd like to see all perspectives before making a decision. But families which document their child's autism online are mostly from the US, no European channels.
I would do anything to help him improve even if my heart is aching. But I would NEVER want to hurt him, even if it's just mentally 😭, It could be that they are behind...or it could just be a difference in preference.
​
Here are a few articles that may be helpful:
[Children's Hospital of Philadelphia](https://www.research.chop.edu/car-autism-roadmap/stimming-what-is-it-and-does-it-matter)
[Child Mind Institute](https://childmind.org/article/autism-and-stimming/)
[Psychiatry.org](https://www.psychiatry.org/news-room/apa-blogs/understand-stimming-repetitive-behaviors-purpose)
This one may help guide you on how to replace a stim, or reduce a stim, if it is necessary for safety or progress:
[Watson Institute](https://www.thewatsoninstitute.org/watson-life-resources/situation/replacement-behaviors-vocal-motor-self-stimulation/)
Here is a link to a youtube video that shows how to teach functional play: [Functional Play](https://www.youtube.com/watch?v=RLGDUE5Ek6o)
If your child doesn't yet imitate you can do "hand over hand" (using your hand to gently control their hand) to help them do what you are asking.
I hope the links all work for you, if not I can try to screen shot the info for you., 24 months is so young! my daughter didn’t speak a word between 14m and 2.5 (she had a regression at 14m). at 2.5 she randomly sang the alphabet, and now, at almost 3.5, though not conversational (yet!), she is semi-verbal and has attempted to be conversational a few times.
keep getting him support and you will likely see an improvement!, In our case it has gotten better. My daughter didn’t say her first word until 2.5. Sign language helped us a lot. Now at 4 she is finally starting to say phrases. She is definitely behind her peers, but she is making progress., There’s still a lot of time for communication to develop. At 3 my son did not speak other than a handful of motivating words and some echolalia. He is 5 1/2 now and he’s not fully conversational, but he’s getting there. We’re able to understand each other and he can communicate his needs. It’s been a slow, slow, slow, road and most of the progress has happened over the past year or so. Lately he’s really into words that rhyme. He’s struggling with pronouns so he’ll say things like “it’s your turn” when he means “it’s my turn” but he’s getting better at catching those mistakes.
Your son may or may not speak, but he can still learn to communicate. And it sounds like from some of the behaviors you’re describing, that he’s already doing that! Even things like getting upset when mom and dad aren’t doing what he wants, are attempts at communication. I think you’re on the right track. Keep working at it!, He is way too young to determine what the future will hold. You should always have hope. My son is 18 and will likely never speak, but I am still hopeful. His vocalizations have become a lot more complex the last 2 years. They are starting to sound conversational and he initiates a back and forth with me. We are also in the process of getting him an AAC device so that we can try to have him communicate with that.
Those repetitive behaviors are stims. You don't have to stop him from stimming unless he is hurting himself or others or causing damage to things. 20 years ago the advice was to interrupt stims, but the mindset now is to allow them unless they are causing harm. You can also try to show him how to play functionally, but stopping his stimming is sure to frustrate him. He does those "repetitive cycles" to keep himself regulated which should help him stay calm. If he has stims that upset him, those are the ones to redirect. When my boy was small, I used to do his repetitive behaviors with him (he loved that) and it helped me to connect with him. I think it made him more inclined to let me show him functional play while we were also doing his stims. He still loves spinning wheels...he spins bowls and plates...and he spins himself! He never gets dizzy but I do just watching him., I’m sorry and I can really feel your pain. Keep hope, in the short term there is reason for hope, many stories of kids making growth and I wouldn’t be surprised if you see that too. In either case long term I have reasons for hope. Science is moving at a crazy pace now, I see new studies and treatments frequently.
The whole way we approach Autism is changing I think. Just give it a few years and I think you see hope long term too., I'm curious to know why the paediatrician has recommended you redirect him from stimming behaviours. My son loves spinning wheels. There's still plenty of ways you can engage with them and lots of language you can use while they're stimming. For us it's only gotten better since two. At two he had maybe one or two words. He is nearly two and a half and must have over 50 by now- can count to ten, label all the shapes, colours, is putting two words together and has plenty of verbs too. Always assume capability is my motto from now on., Repetitive behavior is called stimming. Preventing stims that aren't hurting children is an outdated practice, because it's harmful. We all stim sometimes, for example by clicking a ballpoint pen or shaking our leg, but autistic people do it more often. It's a way for them to self-regulate and process the world around them. If your son is stimming more when he's feeling sad or angry, he might be more stressed in general. Stopping his stims prevents him from regulating his emotions on his own, so externalizing behavior like aggression can go up.
I've had students who were completely non-speaking at age 6 and started talking. I've had students who didn't communicate at all learn to use an aac device at 10 years old. Others have started talking around age 3 or 4, before I ever met them, and are doing really well.
I work with children with intellectual disability and autism, at your son's age it's near impossible to tell wether he has an intellectual disability. He might have a speech delay and start talking soon. He might be able to communicate with an aac device, or sign language, or another way that works for him.
Pointing is a great sign for communication, it's a skill many of my students don't have - it means he understands that he can direct your attention, and that you are able to follow his gaze. That's the biggest hurdle many autistic children have communicating: understanding that other people understand them. You can try some simple signs or picture cards for communication - see wether he copies them or is able to point to them. If he's good at matching, I'd start out with picture cards. Getting some basic communication going tends to cut down on frustration as well., The truth is no one knows. People can swing either way in their development, there are too many genetic and environmental factors for one answer. My child was diagnosed at two and, while they now have much better language skills after initially losing all language, they are still minimally verbal. They did used to just make rhythmic sounds similar to what you’re describing and now can make requests for what they want, often with single words but also some phrases. My child has been in public schools education programs since 3yo and I think being around peers and teachers besides just his family has helped a lot in the progress that they have made. Whether or not your child also has intellectual disability will probably factor in a lot into the arc and speed of their growth trajectory., 24 months is so young, he’s still a baby! It’s great though that you were monitoring him and found out that early. I would recommend getting him a speech therapist as well. There is a lot of development going on in these early years and we started to see some good progress after 3,5yrs. Also the development in our children isn’t linear so it’s very common to see some fast progress in something, then plateau, maybe some regression, small progress and so on. My son is now 4,5 and he’s nothing like he was at 2. Do the best for your son and be optimistic!, Buy the books, more than words, an early start for your child with autism.
Look into DIR Floortime on Google.
Look up agents of speech on YouTube
Copy ms Rachel of of YouTube when interacting with him
Use prompts to get him to speak, but make it fun.
For example, swing him in a big throw blanket, stop and say swing, do that a few times and the don’t swing and don’t say swing and see if he looks at you and says what the heck why aren’t you swinging. Wait for him to make a sound or look in your direction and say swing.
Their brains are the most elastic right now, so I am a big supporter of early intervention instead of ohhhh they’re too young.
Get into speech therapy,
Serve a wide variety of foods. DM me if you have any questions, we are seeing some progress with our son but we are on top of him and playing with him all the time. Our house is a disaster but my son is getting therapy from his parents
Even if your son is not on the spectrum, these resources are great.
Buy him a mr potato head to learn body parts while you sit at a table and you hold the body part and name them together.
Get a tot tube and put shapes down it.
Read him books every single night before bed to try and have language before sleep to commit to long term memory, Thank you so much! This is giving me so much hope! That is so good to hear about your daughter and I'm so happy for you!
Hope is really all I have left. And if I lose it, I'll have nothing, just sadness.
I always dreamt of playing tennis and basketball with my son, going on bike rides together, sharing jokes, meeting his first girlfriend, having a conversation regarding anything, doing pros and cons, trying to pass on to him my experience so that he has a reference on how to handle specific situations. I dreamt of us taking up skiing lessons together, swimming together and having fun in the water, laughing, crying, giving him emotional support in tough situations.
And one day maybe witnessing his wedding while bursting with joy.
And it always hits me like a hard stone: is this all they're going to be? Dreams? I wish I could at least have time to do more research. I wish someone would just sit with him for a few hours in the weekend, so that we can get better at this autism subject., I'm so happy for you and your daughter! I can only hope this for my son too. Wish there was a way to know at least if what we're doing is the right thing., Thank you for the insightful response!
It is so frustrating not knowing if we're doing the right thing, and finding out that putting our trust in the only people that should shed some light on our situation (the specialists/doctors), is wrong.
I'm not sure if Romania is just far behind on the subject or if our medical approaches are just different.
But I will challenge this the next time I hear it from them and try to get an explanation.
It's a never ending confusion and unfortunately we lack the time to do a lot of research. We need to work in order to be able to pay for therapy and to provide my son with everything he needs and our time is spent mostly on work, caregiving and a little sleep in order to charge our batteries just a bit to get ready for the next day.
We feel like robots, but our needs don't matter anymore, cause we love our boy so much., Thank you so much for the encouragement!
I was always a person which does everything in my power to understand a situation or problem in other to come up with the best solution and fix it.
But in this I feel so powerless. People don't share where I'm from, there's no support groups, and I think in this situation the spectrum mommies and daddies would benefit so much by talking to each other and sharing their experience and coming up with solutions together.
What I think makes sense for my kid might not always be the best approach, and I'd like so much to be challenged as to why it's not ideal. Or told that someone else is doing the same and it works.
We feel so alone and in the dark, and it hurts so much., Thank you for the kind response!
Whether it was the child psychiatrist or therapist, the advice was always to stop him from doing it. I saw the word "stim" a few times while online doing research. But mostly it wasn't described by parents as something negative. So I thought that știmming might be something else, because I always got the message from specialists that obsessive repetition (as they call it) is something negative. Now I start to wonder too why they say this...
I'm starting to wonder if in my country (Romania), the perceived solution is to "force" the child out of autism. Now I'm not sure if stopping him is a good thing or a bad thing.
We were always told as children firmly what to do and not to do, by our parents. And there was nothing wrong with that. It helped us keep boundaries until we were old enough to understand why it was necessary.
But it pains so much not knowing if us stopping his repetitions/stimming, is affecting him negatively or positively in the long run.
It is so confusing, as in the US they are not discouraged, while over here they are. And I'd like to see all perspectives before making a decision. But families which document their child's autism online are mostly from the US, no European channels.
I would do anything to help him improve even if my heart is aching. But I would NEVER want to hurt him, even if it's just mentally 😭, It could be that they are behind...or it could just be a difference in preference.
​
Here are a few articles that may be helpful:
[Children's Hospital of Philadelphia](https://www.research.chop.edu/car-autism-roadmap/stimming-what-is-it-and-does-it-matter)
[Child Mind Institute](https://childmind.org/article/autism-and-stimming/)
[Psychiatry.org](https://www.psychiatry.org/news-room/apa-blogs/understand-stimming-repetitive-behaviors-purpose)
This one may help guide you on how to replace a stim, or reduce a stim, if it is necessary for safety or progress:
[Watson Institute](https://www.thewatsoninstitute.org/watson-life-resources/situation/replacement-behaviors-vocal-motor-self-stimulation/)
Here is a link to a youtube video that shows how to teach functional play: [Functional Play](https://www.youtube.com/watch?v=RLGDUE5Ek6o)
If your child doesn't yet imitate you can do "hand over hand" (using your hand to gently control their hand) to help them do what you are asking.
I hope the links all work for you, if not I can try to screen shot the info for you., 24 months is so young! my daughter didn’t speak a word between 14m and 2.5 (she had a regression at 14m). at 2.5 she randomly sang the alphabet, and now, at almost 3.5, though not conversational (yet!), she is semi-verbal and has attempted to be conversational a few times.
keep getting him support and you will likely see an improvement!, In our case it has gotten better. My daughter didn’t say her first word until 2.5. Sign language helped us a lot. Now at 4 she is finally starting to say phrases. She is definitely behind her peers, but she is making progress., There’s still a lot of time for communication to develop. At 3 my son did not speak other than a handful of motivating words and some echolalia. He is 5 1/2 now and he’s not fully conversational, but he’s getting there. We’re able to understand each other and he can communicate his needs. It’s been a slow, slow, slow, road and most of the progress has happened over the past year or so. Lately he’s really into words that rhyme. He’s struggling with pronouns so he’ll say things like “it’s your turn” when he means “it’s my turn” but he’s getting better at catching those mistakes.
Your son may or may not speak, but he can still learn to communicate. And it sounds like from some of the behaviors you’re describing, that he’s already doing that! Even things like getting upset when mom and dad aren’t doing what he wants, are attempts at communication. I think you’re on the right track. Keep working at it!, He is way too young to determine what the future will hold. You should always have hope. My son is 18 and will likely never speak, but I am still hopeful. His vocalizations have become a lot more complex the last 2 years. They are starting to sound conversational and he initiates a back and forth with me. We are also in the process of getting him an AAC device so that we can try to have him communicate with that.
Those repetitive behaviors are stims. You don't have to stop him from stimming unless he is hurting himself or others or causing damage to things. 20 years ago the advice was to interrupt stims, but the mindset now is to allow them unless they are causing harm. You can also try to show him how to play functionally, but stopping his stimming is sure to frustrate him. He does those "repetitive cycles" to keep himself regulated which should help him stay calm. If he has stims that upset him, those are the ones to redirect. When my boy was small, I used to do his repetitive behaviors with him (he loved that) and it helped me to connect with him. I think it made him more inclined to let me show him functional play while we were also doing his stims. He still loves spinning wheels...he spins bowls and plates...and he spins himself! He never gets dizzy but I do just watching him., I’m sorry and I can really feel your pain. Keep hope, in the short term there is reason for hope, many stories of kids making growth and I wouldn’t be surprised if you see that too. In either case long term I have reasons for hope. Science is moving at a crazy pace now, I see new studies and treatments frequently.
The whole way we approach Autism is changing I think. Just give it a few years and I think you see hope long term too., I'm curious to know why the paediatrician has recommended you redirect him from stimming behaviours. My son loves spinning wheels. There's still plenty of ways you can engage with them and lots of language you can use while they're stimming. For us it's only gotten better since two. At two he had maybe one or two words. He is nearly two and a half and must have over 50 by now- can count to ten, label all the shapes, colours, is putting two words together and has plenty of verbs too. Always assume capability is my motto from now on., Repetitive behavior is called stimming. Preventing stims that aren't hurting children is an outdated practice, because it's harmful. We all stim sometimes, for example by clicking a ballpoint pen or shaking our leg, but autistic people do it more often. It's a way for them to self-regulate and process the world around them. If your son is stimming more when he's feeling sad or angry, he might be more stressed in general. Stopping his stims prevents him from regulating his emotions on his own, so externalizing behavior like aggression can go up.
I've had students who were completely non-speaking at age 6 and started talking. I've had students who didn't communicate at all learn to use an aac device at 10 years old. Others have started talking around age 3 or 4, before I ever met them, and are doing really well.
I work with children with intellectual disability and autism, at your son's age it's near impossible to tell wether he has an intellectual disability. He might have a speech delay and start talking soon. He might be able to communicate with an aac device, or sign language, or another way that works for him.
Pointing is a great sign for communication, it's a skill many of my students don't have - it means he understands that he can direct your attention, and that you are able to follow his gaze. That's the biggest hurdle many autistic children have communicating: understanding that other people understand them. You can try some simple signs or picture cards for communication - see wether he copies them or is able to point to them. If he's good at matching, I'd start out with picture cards. Getting some basic communication going tends to cut down on frustration as well., The truth is no one knows. People can swing either way in their development, there are too many genetic and environmental factors for one answer. My child was diagnosed at two and, while they now have much better language skills after initially losing all language, they are still minimally verbal. They did used to just make rhythmic sounds similar to what you’re describing and now can make requests for what they want, often with single words but also some phrases. My child has been in public schools education programs since 3yo and I think being around peers and teachers besides just his family has helped a lot in the progress that they have made. Whether or not your child also has intellectual disability will probably factor in a lot into the arc and speed of their growth trajectory., 24 months is so young, he’s still a baby! It’s great though that you were monitoring him and found out that early. I would recommend getting him a speech therapist as well. There is a lot of development going on in these early years and we started to see some good progress after 3,5yrs. Also the development in our children isn’t linear so it’s very common to see some fast progress in something, then plateau, maybe some regression, small progress and so on. My son is now 4,5 and he’s nothing like he was at 2. Do the best for your son and be optimistic!, Buy the books, more than words, an early start for your child with autism.
Look into DIR Floortime on Google.
Look up agents of speech on YouTube
Copy ms Rachel of of YouTube when interacting with him
Use prompts to get him to speak, but make it fun.
For example, swing him in a big throw blanket, stop and say swing, do that a few times and the don’t swing and don’t say swing and see if he looks at you and says what the heck why aren’t you swinging. Wait for him to make a sound or look in your direction and say swing.
Their brains are the most elastic right now, so I am a big supporter of early intervention instead of ohhhh they’re too young.
Get into speech therapy,
Serve a wide variety of foods. DM me if you have any questions, we are seeing some progress with our son but we are on top of him and playing with him all the time. Our house is a disaster but my son is getting therapy from his parents
Even if your son is not on the spectrum, these resources are great.
Buy him a mr potato head to learn body parts while you sit at a table and you hold the body part and name them together.
Get a tot tube and put shapes down it.
Read him books every single night before bed to try and have language before sleep to commit to long term memory, Thank you so much! This is giving me so much hope! That is so good to hear about your daughter and I'm so happy for you!
Hope is really all I have left. And if I lose it, I'll have nothing, just sadness.
I always dreamt of playing tennis and basketball with my son, going on bike rides together, sharing jokes, meeting his first girlfriend, having a conversation regarding anything, doing pros and cons, trying to pass on to him my experience so that he has a reference on how to handle specific situations. I dreamt of us taking up skiing lessons together, swimming together and having fun in the water, laughing, crying, giving him emotional support in tough situations.
And one day maybe witnessing his wedding while bursting with joy.
And it always hits me like a hard stone: is this all they're going to be? Dreams? I wish I could at least have time to do more research. I wish someone would just sit with him for a few hours in the weekend, so that we can get better at this autism subject., I'm so happy for you and your daughter! I can only hope this for my son too. Wish there was a way to know at least if what we're doing is the right thing., Thank you for the insightful response!
It is so frustrating not knowing if we're doing the right thing, and finding out that putting our trust in the only people that should shed some light on our situation (the specialists/doctors), is wrong.
I'm not sure if Romania is just far behind on the subject or if our medical approaches are just different.
But I will challenge this the next time I hear it from them and try to get an explanation.
It's a never ending confusion and unfortunately we lack the time to do a lot of research. We need to work in order to be able to pay for therapy and to provide my son with everything he needs and our time is spent mostly on work, caregiving and a little sleep in order to charge our batteries just a bit to get ready for the next day.
We feel like robots, but our needs don't matter anymore, cause we love our boy so much., Thank you so much for the encouragement!
I was always a person which does everything in my power to understand a situation or problem in other to come up with the best solution and fix it.
But in this I feel so powerless. People don't share where I'm from, there's no support groups, and I think in this situation the spectrum mommies and daddies would benefit so much by talking to each other and sharing their experience and coming up with solutions together.
What I think makes sense for my kid might not always be the best approach, and I'd like so much to be challenged as to why it's not ideal. Or told that someone else is doing the same and it works.
We feel so alone and in the dark, and it hurts so much., Thank you for the kind response!
Whether it was the child psychiatrist or therapist, the advice was always to stop him from doing it. I saw the word "stim" a few times while online doing research. But mostly it wasn't described by parents as something negative. So I thought that știmming might be something else, because I always got the message from specialists that obsessive repetition (as they call it) is something negative. Now I start to wonder too why they say this...
I'm starting to wonder if in my country (Romania), the perceived solution is to "force" the child out of autism. Now I'm not sure if stopping him is a good thing or a bad thing.
We were always told as children firmly what to do and not to do, by our parents. And there was nothing wrong with that. It helped us keep boundaries until we were old enough to understand why it was necessary.
But it pains so much not knowing if us stopping his repetitions/stimming, is affecting him negatively or positively in the long run.
It is so confusing, as in the US they are not discouraged, while over here they are. And I'd like to see all perspectives before making a decision. But families which document their child's autism online are mostly from the US, no European channels.
I would do anything to help him improve even if my heart is aching. But I would NEVER want to hurt him, even if it's just mentally 😭, It could be that they are behind...or it could just be a difference in preference.
​
Here are a few articles that may be helpful:
[Children's Hospital of Philadelphia](https://www.research.chop.edu/car-autism-roadmap/stimming-what-is-it-and-does-it-matter)
[Child Mind Institute](https://childmind.org/article/autism-and-stimming/)
[Psychiatry.org](https://www.psychiatry.org/news-room/apa-blogs/understand-stimming-repetitive-behaviors-purpose)
This one may help guide you on how to replace a stim, or reduce a stim, if it is necessary for safety or progress:
[Watson Institute](https://www.thewatsoninstitute.org/watson-life-resources/situation/replacement-behaviors-vocal-motor-self-stimulation/)
Here is a link to a youtube video that shows how to teach functional play: [Functional Play](https://www.youtube.com/watch?v=RLGDUE5Ek6o)
If your child doesn't yet imitate you can do "hand over hand" (using your hand to gently control their hand) to help them do what you are asking.
I hope the links all work for you, if not I can try to screen shot the info for you.
|
Is it bad to use affection to motivate obedience?
|
I know it sounds bad, but please read the whole post before coming down on me. My son is 2, level 2 ASD, and is preverbal. I give him tons of hugs and kisses and "I love you's," plus we snuggle watching hamster mazes a LOT, probably a couple hours a day. He comes up to me for hugs pretty frequently, at least a dozen times a day. This child is very motivated by affection and he is definitely not deprived.
He's also got a temperament for elopement. He hasn't straight up run off yet, but he's tried a lot.
So last week we were at the park and he tried running out of the toddler area. I called to him and asked him to come back. It took a minute but he eventually did. I gave him tons of praise, and also gave him a hug and a kiss and told him I was proud of him and that I love him. He got a big grin on his face and he ran off to play. I've been doing it ever since then. He obeys about 70% of the time and he's really happy when he's being praised.
I never tell him he's bad if he didn't listen. I never ever withhold affection. If he does something he's not supposed to, mainly trying to run off, he gets a warning then we leave. Natural consequences
Anyway I thought this was a great idea till I told my husband. He said it sounded like I was training a dog not a toddler. So now I'm wondering if I'm messing my kid up somehow. But in OT his therapist applauds and makes a big deal about it when he does something she asks him to and this seems kinda similar so I really don't know. Is this bad?
|
Young children seeking and responding to praise is one of the hallmarks of typical human development and is how we learn so many things compared with other animals who have more instincts to guide them.( In fact, when children do not respond to praise, that can be an indicator of autism among other things. That's why non -social rewards are used more often in kids with autism like token rewards - because it's working they understand and value. But that's beside the point).
As for the affection piece: One concept that is newer compared to when we were growing up is instead of punishing children when they are upset is letting them be upset and helping regulate him. If he tried to run away and you provide the natural consequence of leaving the park, that doesn't mean you are withholding affection. For example if he has a meltdown and cries you can still hug him and hold him and let him know that you know he is upset. But running away is not safe so we need to leave to be safe.
Edit: all that to say I think you're doing great. I'm a pediatric SLP, Yeah, this is part of how dogs learn. It's also how most children, autistic or not, learn. Both dogs and humans are social creatures, so we crave attention and connection. There's not a single positive reinforcement we can't compare to dogs in some way - like to play video games? Well, dogs play too. Play handball? Basically fetch. Doesn't mean we are dogs.
How was your husband going to raise your child? Positive reactions are a big part of how children learn to talk, how they learn to process their emotions and how they learn to listen to us. You don't want to withhold affection, but amping it up is a great tool - it teaches him to want to listen, because it's fun, and that he can affect your behavior with his actions.
The only concern I could see your husband having is your wording, "obey" doesn't have a great connotation. We want kids to listen, but that doesn't mean they should blindly obey everything they're told. I'm sure you didn't mean it in a negative way, but it's one thing I could see causing negative reactions., This is how parenting typically works, IMO. Kids can tell when their parents are pleased with them. That’s why I don’t get the complaints about ABA being like dog obedience training. Generally parenting is the same. 🤷♀️, You are providing positive reinforcement. When your husband does the dishes, do you say ‘thanks’? Do you make his lunch because you know he’s had a tough day and it’ll make his life easier? We all react to other’s behaviours, trying to encourage the ones we like and help each other feel better. This is human.
If you were withholding affection, it might be concerning. If you were only praising your son for obedience that would be problematic. If your message said, “I ignore my son when he does things I don’t like and only hug him if he does what I say”, but you don’t. You are praising behaviour you wish to see and supporting him through all his other behaviours. Keep up the good work., Positive reinforcement is much better than negative reinforcement.
(Source: parent, researcher, did train chickens ), i do the same with my 4 yo. he doesn’t respond well to stern discipline but is very receptive to praise and encouragement. even if it’s wrong i’m not going to stop because it works well for us, I think you're doing excellent. You're not training a dog, of course, but humans, especially kids, and sounds like especially your kid, reacts well to positive enforcement.
Dogs also like eating chicken. Maybe your husband wouldn't like you to feed your toddler chicken anymore either?, This sounds very normal to me. Even before I knew my kids were ND this was basically how I saw others parent and tried to do this myself.
Does your hubby go with you to OT appointments and see how they encourage desired behavior? This would be a point to make with him either way. Also, does your hubby have any alternatives to offer or is he just being unfairly critical?
But if it’s working for you guys and continues to do so, who cares? It’s definitely not abusive in any way. If the carrot works, why use the stick?, Positive reinforcement is an excellent training technique for doggos and kiddos alike. Heck, it even works on adults! :-), Be glad that he comes back 70% of the time! My son (11) elopes and almost never stops.
As far as sounding like you are training a dog... well... we had a Pyrenees before the kids that we trained. The Pyrenees was so much easier.
You're doing great., It's a basic technique for children and adults. I am literally working on some leadership training that is about appreciation. If your employer does something well, you praise them or give them a small gift or whatever. It's the logic behind bonuses or merit increases. Everyone likes to be acknowledged when they do something right.
My son loves praise and applause and thumbs up. He will clap for me and give me thumbs up when I do something he likes or thinks is cool. I enjoy it when he does that, so I am sure he is into it too. I'm not treating him like a dog, but like any other kid., I think this is great . I wonder what he would think of my backpack harness I got my toddler . He doesn’t listen though when I tell him to come back so I have no choice in busy places and he hates the stroller . He says help me while in it lol, If the concern is that it’s shallow or feels manipulative, just be transparent. Instead just tons of “I love you,” give him a “you know what? It makes me feel really good when you follow directions and we can work together like this.” It also literally spells out the causal relationship that you’re trying to teach him., I could yell “*name* come back, danger!” To my daughter til I was blue in the face but the minute I yell her name and say excitedly “I NEED A HIGH FIVE!” She would bolt towards me faster than you’d think two tiny legs could run. I also often feel like I’m taking training tips I learned from training dogs and using them unintentionally, but if it’s works it works.
When you use positive reinforcement you’re more likely to create the habit/behavior that’s intended than if you were to use negative reinforcement, sometimes causing a “can I get away with this?” mentality in whoever is receiving the negative reinforcement., Thank you for all the feedback. It's especially reassuring coming from a professional. My husband has a bit of childhood trauma around his mom trying some dog training stuff on him, and I'm just making this parenting stuff up as I go so I just try to make sure I'm touching grass and not being a weirdo sometimes.
I'm a big fan of helping my kiddo regulate. It's one reason I'm so affectionate with him. I grew up without that. I didn't even know the concept of homeostasis until I learned it in college biology. I figure leaving the park is unpleasant enough without adding punishment on as well., That makes a lot of sense. Most of my parenting is just trying to find an autism-friendly version of regular parenting stuff. If my son were NT I probably wouldn't think twice about most of this stuff., When my husband was a kid his mom did a couple of really unpleasant things to him that are often used to train dogs so he's probably extra sensitive to that. I'll talk to him about it again. I think I have better perspective on it after getting feedback here., He unfortunately can't go to the appointments as they're during his working hours. I think he's mainly concerned about potentially giving out kiddo issues in the future. I'm going to talk to him about it again and explain how it works comparing it to the therapy. I think more context will help him understand it better., Bahaha! I had a black lab for 15 years before my son was born. She was easier to train also lol. I've absentmindedly patted my son in the head and called him a good baby, I've referred to the pediatrician as the vet, and some other things too. The pet-owner reflexes die hard lol.
It doesn't help that my son loves dogs, and when he sees one he'll crawl around on all 4's imitating them lmao, Sorry wasn't trying to be rude or minimize your husband's experience and issues. I just wanted to point out the logical fallacy of "if we do this to dogs, and we do it to kids, then that means we are treating our kid like a dog".
I love all the other comments here, especially by professionals. Hopefully that helps your hubs.
One thing I can personally add on top is that some autistic kids get bullied, are left out from others, and usually have a hard time socially. It's critically important that my wife and I ensure our kid views us as a safe place if and when things go bad. This means tons of positive enforcement, and not getting mad at them for making mistakes. This affection your giving your kid is teaching them to view you as a safe place.
There's tons of literature and YouTube from professionals on the value of affection and positive reinforcement., Young children seeking and responding to praise is one of the hallmarks of typical human development and is how we learn so many things compared with other animals who have more instincts to guide them.( In fact, when children do not respond to praise, that can be an indicator of autism among other things. That's why non -social rewards are used more often in kids with autism like token rewards - because it's working they understand and value. But that's beside the point).
As for the affection piece: One concept that is newer compared to when we were growing up is instead of punishing children when they are upset is letting them be upset and helping regulate him. If he tried to run away and you provide the natural consequence of leaving the park, that doesn't mean you are withholding affection. For example if he has a meltdown and cries you can still hug him and hold him and let him know that you know he is upset. But running away is not safe so we need to leave to be safe.
Edit: all that to say I think you're doing great. I'm a pediatric SLP, Yeah, this is part of how dogs learn. It's also how most children, autistic or not, learn. Both dogs and humans are social creatures, so we crave attention and connection. There's not a single positive reinforcement we can't compare to dogs in some way - like to play video games? Well, dogs play too. Play handball? Basically fetch. Doesn't mean we are dogs.
How was your husband going to raise your child? Positive reactions are a big part of how children learn to talk, how they learn to process their emotions and how they learn to listen to us. You don't want to withhold affection, but amping it up is a great tool - it teaches him to want to listen, because it's fun, and that he can affect your behavior with his actions.
The only concern I could see your husband having is your wording, "obey" doesn't have a great connotation. We want kids to listen, but that doesn't mean they should blindly obey everything they're told. I'm sure you didn't mean it in a negative way, but it's one thing I could see causing negative reactions., This is how parenting typically works, IMO. Kids can tell when their parents are pleased with them. That’s why I don’t get the complaints about ABA being like dog obedience training. Generally parenting is the same. 🤷♀️, You are providing positive reinforcement. When your husband does the dishes, do you say ‘thanks’? Do you make his lunch because you know he’s had a tough day and it’ll make his life easier? We all react to other’s behaviours, trying to encourage the ones we like and help each other feel better. This is human.
If you were withholding affection, it might be concerning. If you were only praising your son for obedience that would be problematic. If your message said, “I ignore my son when he does things I don’t like and only hug him if he does what I say”, but you don’t. You are praising behaviour you wish to see and supporting him through all his other behaviours. Keep up the good work., Positive reinforcement is much better than negative reinforcement.
(Source: parent, researcher, did train chickens ), i do the same with my 4 yo. he doesn’t respond well to stern discipline but is very receptive to praise and encouragement. even if it’s wrong i’m not going to stop because it works well for us, I think you're doing excellent. You're not training a dog, of course, but humans, especially kids, and sounds like especially your kid, reacts well to positive enforcement.
Dogs also like eating chicken. Maybe your husband wouldn't like you to feed your toddler chicken anymore either?, This sounds very normal to me. Even before I knew my kids were ND this was basically how I saw others parent and tried to do this myself.
Does your hubby go with you to OT appointments and see how they encourage desired behavior? This would be a point to make with him either way. Also, does your hubby have any alternatives to offer or is he just being unfairly critical?
But if it’s working for you guys and continues to do so, who cares? It’s definitely not abusive in any way. If the carrot works, why use the stick?, Positive reinforcement is an excellent training technique for doggos and kiddos alike. Heck, it even works on adults! :-), Be glad that he comes back 70% of the time! My son (11) elopes and almost never stops.
As far as sounding like you are training a dog... well... we had a Pyrenees before the kids that we trained. The Pyrenees was so much easier.
You're doing great., It's a basic technique for children and adults. I am literally working on some leadership training that is about appreciation. If your employer does something well, you praise them or give them a small gift or whatever. It's the logic behind bonuses or merit increases. Everyone likes to be acknowledged when they do something right.
My son loves praise and applause and thumbs up. He will clap for me and give me thumbs up when I do something he likes or thinks is cool. I enjoy it when he does that, so I am sure he is into it too. I'm not treating him like a dog, but like any other kid., I think this is great . I wonder what he would think of my backpack harness I got my toddler . He doesn’t listen though when I tell him to come back so I have no choice in busy places and he hates the stroller . He says help me while in it lol, If the concern is that it’s shallow or feels manipulative, just be transparent. Instead just tons of “I love you,” give him a “you know what? It makes me feel really good when you follow directions and we can work together like this.” It also literally spells out the causal relationship that you’re trying to teach him., I could yell “*name* come back, danger!” To my daughter til I was blue in the face but the minute I yell her name and say excitedly “I NEED A HIGH FIVE!” She would bolt towards me faster than you’d think two tiny legs could run. I also often feel like I’m taking training tips I learned from training dogs and using them unintentionally, but if it’s works it works.
When you use positive reinforcement you’re more likely to create the habit/behavior that’s intended than if you were to use negative reinforcement, sometimes causing a “can I get away with this?” mentality in whoever is receiving the negative reinforcement., Thank you for all the feedback. It's especially reassuring coming from a professional. My husband has a bit of childhood trauma around his mom trying some dog training stuff on him, and I'm just making this parenting stuff up as I go so I just try to make sure I'm touching grass and not being a weirdo sometimes.
I'm a big fan of helping my kiddo regulate. It's one reason I'm so affectionate with him. I grew up without that. I didn't even know the concept of homeostasis until I learned it in college biology. I figure leaving the park is unpleasant enough without adding punishment on as well., That makes a lot of sense. Most of my parenting is just trying to find an autism-friendly version of regular parenting stuff. If my son were NT I probably wouldn't think twice about most of this stuff., When my husband was a kid his mom did a couple of really unpleasant things to him that are often used to train dogs so he's probably extra sensitive to that. I'll talk to him about it again. I think I have better perspective on it after getting feedback here., He unfortunately can't go to the appointments as they're during his working hours. I think he's mainly concerned about potentially giving out kiddo issues in the future. I'm going to talk to him about it again and explain how it works comparing it to the therapy. I think more context will help him understand it better., Bahaha! I had a black lab for 15 years before my son was born. She was easier to train also lol. I've absentmindedly patted my son in the head and called him a good baby, I've referred to the pediatrician as the vet, and some other things too. The pet-owner reflexes die hard lol.
It doesn't help that my son loves dogs, and when he sees one he'll crawl around on all 4's imitating them lmao, Sorry wasn't trying to be rude or minimize your husband's experience and issues. I just wanted to point out the logical fallacy of "if we do this to dogs, and we do it to kids, then that means we are treating our kid like a dog".
I love all the other comments here, especially by professionals. Hopefully that helps your hubs.
One thing I can personally add on top is that some autistic kids get bullied, are left out from others, and usually have a hard time socially. It's critically important that my wife and I ensure our kid views us as a safe place if and when things go bad. This means tons of positive enforcement, and not getting mad at them for making mistakes. This affection your giving your kid is teaching them to view you as a safe place.
There's tons of literature and YouTube from professionals on the value of affection and positive reinforcement., Young children seeking and responding to praise is one of the hallmarks of typical human development and is how we learn so many things compared with other animals who have more instincts to guide them.( In fact, when children do not respond to praise, that can be an indicator of autism among other things. That's why non -social rewards are used more often in kids with autism like token rewards - because it's working they understand and value. But that's beside the point).
As for the affection piece: One concept that is newer compared to when we were growing up is instead of punishing children when they are upset is letting them be upset and helping regulate him. If he tried to run away and you provide the natural consequence of leaving the park, that doesn't mean you are withholding affection. For example if he has a meltdown and cries you can still hug him and hold him and let him know that you know he is upset. But running away is not safe so we need to leave to be safe.
Edit: all that to say I think you're doing great. I'm a pediatric SLP, Yeah, this is part of how dogs learn. It's also how most children, autistic or not, learn. Both dogs and humans are social creatures, so we crave attention and connection. There's not a single positive reinforcement we can't compare to dogs in some way - like to play video games? Well, dogs play too. Play handball? Basically fetch. Doesn't mean we are dogs.
How was your husband going to raise your child? Positive reactions are a big part of how children learn to talk, how they learn to process their emotions and how they learn to listen to us. You don't want to withhold affection, but amping it up is a great tool - it teaches him to want to listen, because it's fun, and that he can affect your behavior with his actions.
The only concern I could see your husband having is your wording, "obey" doesn't have a great connotation. We want kids to listen, but that doesn't mean they should blindly obey everything they're told. I'm sure you didn't mean it in a negative way, but it's one thing I could see causing negative reactions., This is how parenting typically works, IMO. Kids can tell when their parents are pleased with them. That’s why I don’t get the complaints about ABA being like dog obedience training. Generally parenting is the same. 🤷♀️, You are providing positive reinforcement. When your husband does the dishes, do you say ‘thanks’? Do you make his lunch because you know he’s had a tough day and it’ll make his life easier? We all react to other’s behaviours, trying to encourage the ones we like and help each other feel better. This is human.
If you were withholding affection, it might be concerning. If you were only praising your son for obedience that would be problematic. If your message said, “I ignore my son when he does things I don’t like and only hug him if he does what I say”, but you don’t. You are praising behaviour you wish to see and supporting him through all his other behaviours. Keep up the good work., Positive reinforcement is much better than negative reinforcement.
(Source: parent, researcher, did train chickens ), i do the same with my 4 yo. he doesn’t respond well to stern discipline but is very receptive to praise and encouragement. even if it’s wrong i’m not going to stop because it works well for us, I think you're doing excellent. You're not training a dog, of course, but humans, especially kids, and sounds like especially your kid, reacts well to positive enforcement.
Dogs also like eating chicken. Maybe your husband wouldn't like you to feed your toddler chicken anymore either?, This sounds very normal to me. Even before I knew my kids were ND this was basically how I saw others parent and tried to do this myself.
Does your hubby go with you to OT appointments and see how they encourage desired behavior? This would be a point to make with him either way. Also, does your hubby have any alternatives to offer or is he just being unfairly critical?
But if it’s working for you guys and continues to do so, who cares? It’s definitely not abusive in any way. If the carrot works, why use the stick?, Positive reinforcement is an excellent training technique for doggos and kiddos alike. Heck, it even works on adults! :-), Be glad that he comes back 70% of the time! My son (11) elopes and almost never stops.
As far as sounding like you are training a dog... well... we had a Pyrenees before the kids that we trained. The Pyrenees was so much easier.
You're doing great., It's a basic technique for children and adults. I am literally working on some leadership training that is about appreciation. If your employer does something well, you praise them or give them a small gift or whatever. It's the logic behind bonuses or merit increases. Everyone likes to be acknowledged when they do something right.
My son loves praise and applause and thumbs up. He will clap for me and give me thumbs up when I do something he likes or thinks is cool. I enjoy it when he does that, so I am sure he is into it too. I'm not treating him like a dog, but like any other kid., I think this is great . I wonder what he would think of my backpack harness I got my toddler . He doesn’t listen though when I tell him to come back so I have no choice in busy places and he hates the stroller . He says help me while in it lol, If the concern is that it’s shallow or feels manipulative, just be transparent. Instead just tons of “I love you,” give him a “you know what? It makes me feel really good when you follow directions and we can work together like this.” It also literally spells out the causal relationship that you’re trying to teach him., I could yell “*name* come back, danger!” To my daughter til I was blue in the face but the minute I yell her name and say excitedly “I NEED A HIGH FIVE!” She would bolt towards me faster than you’d think two tiny legs could run. I also often feel like I’m taking training tips I learned from training dogs and using them unintentionally, but if it’s works it works.
When you use positive reinforcement you’re more likely to create the habit/behavior that’s intended than if you were to use negative reinforcement, sometimes causing a “can I get away with this?” mentality in whoever is receiving the negative reinforcement., Thank you for all the feedback. It's especially reassuring coming from a professional. My husband has a bit of childhood trauma around his mom trying some dog training stuff on him, and I'm just making this parenting stuff up as I go so I just try to make sure I'm touching grass and not being a weirdo sometimes.
I'm a big fan of helping my kiddo regulate. It's one reason I'm so affectionate with him. I grew up without that. I didn't even know the concept of homeostasis until I learned it in college biology. I figure leaving the park is unpleasant enough without adding punishment on as well., That makes a lot of sense. Most of my parenting is just trying to find an autism-friendly version of regular parenting stuff. If my son were NT I probably wouldn't think twice about most of this stuff., When my husband was a kid his mom did a couple of really unpleasant things to him that are often used to train dogs so he's probably extra sensitive to that. I'll talk to him about it again. I think I have better perspective on it after getting feedback here., He unfortunately can't go to the appointments as they're during his working hours. I think he's mainly concerned about potentially giving out kiddo issues in the future. I'm going to talk to him about it again and explain how it works comparing it to the therapy. I think more context will help him understand it better., Bahaha! I had a black lab for 15 years before my son was born. She was easier to train also lol. I've absentmindedly patted my son in the head and called him a good baby, I've referred to the pediatrician as the vet, and some other things too. The pet-owner reflexes die hard lol.
It doesn't help that my son loves dogs, and when he sees one he'll crawl around on all 4's imitating them lmao, Sorry wasn't trying to be rude or minimize your husband's experience and issues. I just wanted to point out the logical fallacy of "if we do this to dogs, and we do it to kids, then that means we are treating our kid like a dog".
I love all the other comments here, especially by professionals. Hopefully that helps your hubs.
One thing I can personally add on top is that some autistic kids get bullied, are left out from others, and usually have a hard time socially. It's critically important that my wife and I ensure our kid views us as a safe place if and when things go bad. This means tons of positive enforcement, and not getting mad at them for making mistakes. This affection your giving your kid is teaching them to view you as a safe place.
There's tons of literature and YouTube from professionals on the value of affection and positive reinforcement., Young children seeking and responding to praise is one of the hallmarks of typical human development and is how we learn so many things compared with other animals who have more instincts to guide them.( In fact, when children do not respond to praise, that can be an indicator of autism among other things. That's why non -social rewards are used more often in kids with autism like token rewards - because it's working they understand and value. But that's beside the point).
As for the affection piece: One concept that is newer compared to when we were growing up is instead of punishing children when they are upset is letting them be upset and helping regulate him. If he tried to run away and you provide the natural consequence of leaving the park, that doesn't mean you are withholding affection. For example if he has a meltdown and cries you can still hug him and hold him and let him know that you know he is upset. But running away is not safe so we need to leave to be safe.
Edit: all that to say I think you're doing great. I'm a pediatric SLP, Yeah, this is part of how dogs learn. It's also how most children, autistic or not, learn. Both dogs and humans are social creatures, so we crave attention and connection. There's not a single positive reinforcement we can't compare to dogs in some way - like to play video games? Well, dogs play too. Play handball? Basically fetch. Doesn't mean we are dogs.
How was your husband going to raise your child? Positive reactions are a big part of how children learn to talk, how they learn to process their emotions and how they learn to listen to us. You don't want to withhold affection, but amping it up is a great tool - it teaches him to want to listen, because it's fun, and that he can affect your behavior with his actions.
The only concern I could see your husband having is your wording, "obey" doesn't have a great connotation. We want kids to listen, but that doesn't mean they should blindly obey everything they're told. I'm sure you didn't mean it in a negative way, but it's one thing I could see causing negative reactions., This is how parenting typically works, IMO. Kids can tell when their parents are pleased with them. That’s why I don’t get the complaints about ABA being like dog obedience training. Generally parenting is the same. 🤷♀️, You are providing positive reinforcement. When your husband does the dishes, do you say ‘thanks’? Do you make his lunch because you know he’s had a tough day and it’ll make his life easier? We all react to other’s behaviours, trying to encourage the ones we like and help each other feel better. This is human.
If you were withholding affection, it might be concerning. If you were only praising your son for obedience that would be problematic. If your message said, “I ignore my son when he does things I don’t like and only hug him if he does what I say”, but you don’t. You are praising behaviour you wish to see and supporting him through all his other behaviours. Keep up the good work., Positive reinforcement is much better than negative reinforcement.
(Source: parent, researcher, did train chickens ), i do the same with my 4 yo. he doesn’t respond well to stern discipline but is very receptive to praise and encouragement. even if it’s wrong i’m not going to stop because it works well for us, I think you're doing excellent. You're not training a dog, of course, but humans, especially kids, and sounds like especially your kid, reacts well to positive enforcement.
Dogs also like eating chicken. Maybe your husband wouldn't like you to feed your toddler chicken anymore either?, This sounds very normal to me. Even before I knew my kids were ND this was basically how I saw others parent and tried to do this myself.
Does your hubby go with you to OT appointments and see how they encourage desired behavior? This would be a point to make with him either way. Also, does your hubby have any alternatives to offer or is he just being unfairly critical?
But if it’s working for you guys and continues to do so, who cares? It’s definitely not abusive in any way. If the carrot works, why use the stick?, Positive reinforcement is an excellent training technique for doggos and kiddos alike. Heck, it even works on adults! :-), Be glad that he comes back 70% of the time! My son (11) elopes and almost never stops.
As far as sounding like you are training a dog... well... we had a Pyrenees before the kids that we trained. The Pyrenees was so much easier.
You're doing great., It's a basic technique for children and adults. I am literally working on some leadership training that is about appreciation. If your employer does something well, you praise them or give them a small gift or whatever. It's the logic behind bonuses or merit increases. Everyone likes to be acknowledged when they do something right.
My son loves praise and applause and thumbs up. He will clap for me and give me thumbs up when I do something he likes or thinks is cool. I enjoy it when he does that, so I am sure he is into it too. I'm not treating him like a dog, but like any other kid., I think this is great . I wonder what he would think of my backpack harness I got my toddler . He doesn’t listen though when I tell him to come back so I have no choice in busy places and he hates the stroller . He says help me while in it lol, If the concern is that it’s shallow or feels manipulative, just be transparent. Instead just tons of “I love you,” give him a “you know what? It makes me feel really good when you follow directions and we can work together like this.” It also literally spells out the causal relationship that you’re trying to teach him., I could yell “*name* come back, danger!” To my daughter til I was blue in the face but the minute I yell her name and say excitedly “I NEED A HIGH FIVE!” She would bolt towards me faster than you’d think two tiny legs could run. I also often feel like I’m taking training tips I learned from training dogs and using them unintentionally, but if it’s works it works.
When you use positive reinforcement you’re more likely to create the habit/behavior that’s intended than if you were to use negative reinforcement, sometimes causing a “can I get away with this?” mentality in whoever is receiving the negative reinforcement., Thank you for all the feedback. It's especially reassuring coming from a professional. My husband has a bit of childhood trauma around his mom trying some dog training stuff on him, and I'm just making this parenting stuff up as I go so I just try to make sure I'm touching grass and not being a weirdo sometimes.
I'm a big fan of helping my kiddo regulate. It's one reason I'm so affectionate with him. I grew up without that. I didn't even know the concept of homeostasis until I learned it in college biology. I figure leaving the park is unpleasant enough without adding punishment on as well., That makes a lot of sense. Most of my parenting is just trying to find an autism-friendly version of regular parenting stuff. If my son were NT I probably wouldn't think twice about most of this stuff., When my husband was a kid his mom did a couple of really unpleasant things to him that are often used to train dogs so he's probably extra sensitive to that. I'll talk to him about it again. I think I have better perspective on it after getting feedback here., He unfortunately can't go to the appointments as they're during his working hours. I think he's mainly concerned about potentially giving out kiddo issues in the future. I'm going to talk to him about it again and explain how it works comparing it to the therapy. I think more context will help him understand it better., Bahaha! I had a black lab for 15 years before my son was born. She was easier to train also lol. I've absentmindedly patted my son in the head and called him a good baby, I've referred to the pediatrician as the vet, and some other things too. The pet-owner reflexes die hard lol.
It doesn't help that my son loves dogs, and when he sees one he'll crawl around on all 4's imitating them lmao, Sorry wasn't trying to be rude or minimize your husband's experience and issues. I just wanted to point out the logical fallacy of "if we do this to dogs, and we do it to kids, then that means we are treating our kid like a dog".
I love all the other comments here, especially by professionals. Hopefully that helps your hubs.
One thing I can personally add on top is that some autistic kids get bullied, are left out from others, and usually have a hard time socially. It's critically important that my wife and I ensure our kid views us as a safe place if and when things go bad. This means tons of positive enforcement, and not getting mad at them for making mistakes. This affection your giving your kid is teaching them to view you as a safe place.
There's tons of literature and YouTube from professionals on the value of affection and positive reinforcement.
|
Is it possible my child has autism because I was sad and crying most of my pregnancy?
|
You know how they say happy mom, happy baby? Well basically I got married during COVID, moved to a different state, lived with my in laws for the first 10 months, got pregnant 1 month after marriage. Missed my mom and old life a lot. All of these changes made me really sad. But the main reason I would cry was because of my husband; he was mean to me and emotionally/mentally abusive. (Would give me silent treatment and stuff). He also did not treat me well during post partum. Fast forward to now. My son is 2.5 years old and diagnosed with autism back in September. When the practitioner first told me about the diagnosis, I just felt like a black cloud was entering the room and suffocating me. I thought about how I was always sobbing and crying during my pregnancy. (I’m not blaming myself. I’m also not blaming my husband cause I can’t make him feel like this is his fault). Im just wondering if this could be a reason? (Btw my husband has changed now and he is not like before. He is a better person. Not perfect but a way better human than he was before.)
|
no. your emotions during pregnancy didn’t cause your child’s autism.
i was in a great place emotionally when i was pregnant, life was not stressful, and i had an easy birth, and my daughter is autistic., Nothing you did or didn’t do caused this. It’s just the way he’s built. , It’s totally natural for you to look for things you “did wrong” or could have done differently to have avoided this diagnosis. We probably all went through this to some degree — I definitely did. I still have questions that will likely never be answered.
The good news is, that as time goes by, you can learn to let that (mostly) go. Between genetics and possibly some environmental factors, your son has this diagnosis, and it’s likely we’ll never know why. That’s hard.
As he grows and you learn how his amazing brain is unique and needs unique things, the “why” stops mattering so much.
My son is now 14. He had many challenging years, but we helped him in every way we could, kept calm when he couldn’t, kept loving him, and he’s now a happy, delightful kid who will likely always need extra support. I wish I knew why this happened, but it really doesn’t matter anymore.
Hugs as you go through this time. And I’m glad your husband is treating you better. You deserve love and respect., No. Nothing you did caused your child to be autistic.
In a significant number of cases, one or more of the parents is also on the spectrum but often undiagnosed ... as research has shown there is a lot to suggest a hereditary connection. Not exclusively, as there are parents who are not on the spectrum and have a child who is. These parents may have their own parents on the spectrum and don't realize it or it could be what's called de novo (first occurring). But the larger point is, you didn't do anything to make it happen. I'm glad your husband is improving., No., Nope not even close to possible, No., It’s not your fault. This goes back to the old belief of “refrigerator mothers” meaning that people used to blame mothers and say that they must be unloving and cold to create their autistic children. It was a terrible time, and I’m thankful my child is alive when that’s largely not believed.
I get sad when I see posts like this because sometimes we do wonder. I went through a phase of blaming a partial placenta abruption at birth for mine. But the cause is likely genetic. My husband could be in the spectrum, he just needs to get assessed., Autism is a brain type, you didn't cause this, First of all, how could you have felt any different in that situation? It’s normal for what you were going through. What a horrible situation to be in when you’re pregnant and postpartum, I’m so sorry to you!
Second, stress is correlation not causation - so lots of pregnant women may be stressed but there’s also of plently of other pregnant women who aren’t stressed who have kids with autism. You didn’t cause your child to have autism by having your (very appropriate to the situation) feelings.
I’m very glad to hear your husband has changed for the better now. I recommend letting what caused your child’s’ autism go, because it is usually a rabbit hole and it leads to guilt over things that you shouldn’t feel guilty for. Of course, unless you’re exploring one of the only known causations which is genetics - if you feel like you or your husband may be on the spectrum too and could benefit from knowing and understanding that., Absolutely zero chance. Pregnancy hormones make most people emotional, regardless of their life circumstances. I cried over TV shows and ads that I normally would consider sentimental, manipulative trash. If being emotional and crying caused autistic kids, we would have a majority of autistic kids., I’ve never heard that phrase. I was elated, over the moon, bursting with joy during pregnancy. Level 2 kiddo here, I get you. I had a tough pregnancy where I don't think I even ate well. It has caused a lot of health issues overall in me. My kid regressed at 2. We didn't do happy things and didn't focus on my kid since I was wrapped up in the emotions of a broken marriage. It felt like my kiddo took in a lot of those emotions and "shutdown" mentally. I know that a lot of people say otherwise, but there are also certain people/studies who mention that the stress can be one of the many factors.
I know that I'm human and I did the best I could in my circumstances. We've moved and the changes in the environment have also helped my kiddo. I know that it's not my fault entirely but I would have done things differently if I could've been more aware of what could happen if I didn't take care of myself better when pregnant, What? No., It makes sense that pregnancy can affect infants, but it likely goes back even before you conceived your child
Your mental & physical health prior to even conceiving the child can have affects on your child. (Obese parents are 50% more likely to have obese or overweight children)
This your male partners mental & physical health also plays a contributing factor too.
Mix in drugs, alcohol & processed food (full of chemicals) etc add some stress, anxiety & depression
Most drugs stay in your body for weeks or months & food can alter bodily function like blood flow, sugar levels, semen count for years.
I actually believe this is the root cause of ND and why we have a huge spike in it.
The diets & lifestyles of mother & fathers conceiving children 50 - 100 years ago is very different today.
There was also no such thing as the pill 30-40years ago. A drug which massively effects a women’s hormones., Ok I see. Thanks., I understand, Thank you for your kind words. I’m curious, what things did you do to help your child? How’s he doing now? Is he nonverbal or verbal? How is he in school? Does he have friends? I worry about these things for my son. But I want to do everything I can to help him., I think my husband is also on the spectrum, Thank you for your kind words, That’s so true, How to know what level your child is? Like, when my son was first diagnosed, the practitioner said he’s mild to moderate. Does that mean he’s level one?, I’m glad things are better for you, Really great questions. He’s verbal now, but was not speaking much until 5 or 6, and until he was 11 he would scream to communicate any time he was upset or frustrated. It felt constant and it was very hard. Now, at 14 *I can’t remember the last time he screamed* and that blows my mind.
Here’s all the stuff we tried, and some we paid for, and most we had covered by the state once we got him on Medicaid: We started speech therapy 2x a week when he was 4. We tried occupational therapy for years (that helps many but I don’t know that it helped him.) We tried horse therapy, swim therapy, social skills groups. Other than the speech therapy, no idea if any of it helped him. My advice is to start as early as possible with appropriate therapy, and do what you need to do to get help paying for things— there are resources out there! It sucks to figure it out, but it’s worth it.
He’s always been in special education in school and we’ve always felt well supported. I have had to fight for him a couple of times, and will always advocate as much as necessary. They have integrated him into regular classrooms as much as possible, which is good for both him and the other kids.
Does he have friends? Good question. He perceives he has friends. He has been included in a group of boys (because we know one of the kids) and sits with them at lunch and they will talk to him. Does he get invited to typical friend things with these boys? No. He is invited to the one friend’s birthday party every year, and that has been enough for him to feel happy. Eternally grateful for this one friend. I do not think he feels bad about how it is, which I’m also grateful for.
At the beginning I felt like I could just figure out what we needed to do to “fix” him. The biggest breakthrough came for me when I realized he’s wonderful the way he is, and we need quirky people with different brains in our world. To make him “typical” would be to lose who he is. And he’s incredible.
If you’re open to reading, I highly recommend Dr Ross Greene, Dr Barry Prizant, and Debbie Reber. Avoid anyone claiming they can “cure” him. It’s an insult to his amazing future self.
Seriously, hugs to you — be strong AND take care of yourself too. He needs you and you can do this., But crying over TV shows is different than crying because your husband is ignoring you/mentally abusing you, Oh I’m not sure, I was given a scale of 1, 2 and 3… you should look that up on Google to see or ask his doctor. As far as I know, my son at level 2 means he needs moderate support, This is amazing!!!! You sound like a great mom, Is he verbal?, Thank you — my parents were not great… so I really try my hardest!, No, he can make sounds and babbles, but he doesn’t communicate through speaking. He will be 3 next month, 🥺
|
Is it true that if you space out the your second child might not get ASD. My older one is 5 and level 2/3 and we are trying for a another one but this is always on my mind.
|
then*(typo)
|
Where did you hear this? There's no evidence to suggest age difference between siblings has any bearing on autism.
Edit: in fact, higher maternal age has a positive correlation with ASD so the exact opposite may end up being true in some cases, depending on how old the mother was when she had the first kid., My first has it my second doesn’t. 2 yr age gap, My brothers kids are 4 years apart. Both have ASD.
Mine are 18 months apart, both have ASD., Unfortunately genetics doesn't work like that, There are 3 years and 4 years between my first second and third child. All ASD., There's no evidence of that, though I've heard if you have one autistic kid, the chances of having another are higher.
My oldest is autistic. He's 9 and we had his first brother when he was 5. He isn't autistic. Then had his other brother 15 months later. Also not autistic, but not 100% as he's still pretty young. If he is autistic, he isn't non verbal, like my first though., My kids are 16 mos apart. My oldest is ASD, youngest is NT., Mine are 21 months apart. First has it, second doesn't, 21 months between my 2 girls. Youngest is not on the spectrum., My kids are 30 months apart, oldest has ASD, younger one doesn’t., My ASD son has an NT twin sister and an NT little brother who is 14 months younger than him., I have an 11yo, 9yo and 2.5yo. The youngest has GDD and is waiting on his ASD assessment (he's defs on the spectrum), My kids are 6 years apart and both autistic. My son, who's my youngest, has more significant needs and is nonverbal. I think it's a 50/50 shot once it's in your DNA no matter how long you wait. We waited because I was very young when I had my daughter. Love em both to pieces and wouldn't change a thing., My three kids all have about 2.3 years between them, older 2 are ASD and youngest NT with some mild delays, Not true for my family. Eight years apart and still ASD for both boys, Not at all this sounds completely made up.
10 year old level 1/2, 6 year old level 3, 3 year old level 2, 20 month not diagnosed yet but feels like a level 1 to us, My first son is 25
My second son is 6
They both have autism, Wife and I were just having the same convo today. We’ve been going back and forth on a second kid for years now and running out of time, I think this is what you are talking about?[Key Findings: Autism is Associated with Amount of Time Between Births](https://www.cdc.gov/ncbddd/autism/features/time-between-births.html), 11 & 5 years *6 year separation- both are autistic, my youngest is much more severe & has a bonus w/ eliplsepy, I spaced mine out 4.5yrs between them and the youngest has severe autism 🤣, My first is NT(he was a bit delayed when younger but caught up), he's 7yrs older than his brother. His brother is my ND child. I've read the opposite, higher chance of ASD as you age. I wasn't in that increased age range yet for mine., My kids are 12 years apart. My oldest doesn’t have it, youngest does., Jesus, First kid ASD lvl 2 - only 13 month age gap - 2nd kid NT - 26 month age gap - 3rd kid NT (maybe lvl 1 he's only 18 months but very typical development so far).
I don't think the age gap matters. Maybe the mothers age might add in some risk factors to increase the chance of an ASD kid.
Parents should go into trying to conceive with the idea and acceptance that their child could be different, have additional needs, be medically fragile, and be ready for all those possibilities., Mine are 4 years apart, the 4yo was diagnosed before the 8 year old was, No evidence of that, Autism follows the male side of the gene pool., I honestly don’t think timing matters at all. My 6 year old is ND and my 4 year old is NT and they are right at 19 months apart., That is not how genetics work. Biology is my hyperfixation do if you'll allow me to infodump for a second. (Keep in mind this is simplified since genetics I am currently still learning about. I am definitely not an expert so take this with some salt)
Either you, your partner or both carry the Autism gene. Depending on if only one of you or both of you carry it the chances of your child carrying it fluctuate. But going off of one of you having the gene there is a 25% chance your second child will also be autistic. The older you get the more this chance goes up due to mutation becoming more frequent with maternal aging. I don't think levels are in any way determined by genetics or maternal age especially since they can change in a lifetime. I know people who were diagnosed as level one and are now level three after a really bad autism burnout and people diagnosed with level three who are now level one due to therapy., My first and second are two years apart. The oldest is autistic, second is ADHD. Our second and third are 4 years apart and third kid is autistic and ADHD. I don't think it matters at all how long you wait. I've never heard that before, it sounds like bogus information., The age gap shouldn’t have anything to do with it.
If you can identify the genetic source of your child’s (and potentially your and/or your spouses) autism you should be able to determine what the likelihood of your next child being on the spectrum.
My form of autism is caused by a partially dominant mutation, and I have two copies of it, so both of my parents and all of my children have a single copy, which leaves them with partial perception of positive social feedback whereas I perceive none.
Statistically, one of my parents’ 4 children would be expected to have 2 copies of the mutation, 2 would be expected to carry a single copy, and 1 would be expected to not have a copy of it.
Since my ex-wife didn’t carry a copy of it, my children each have just the copy they received from me.
There’s been substantial research into the genetic causes of autism, but regrettably the medical community hasn’t kept up with it, and is generally ignorant of and/or disinterested in it., I have a 6 and 5 year old. 13 months apart. First daughter has Level 1 ASD and 2nd daughter has Level 3 ASD with Chromosomal Duplicate Syndrome., Firstborn (17) is lvl 3, 13 months later we had #2 who died from neurological issues (spina bifida), #3 (14) was three years after #1 and is lvl 3.
We morbidly joke that we are 0/3 on the neurological roulette wheel.
I wouldn't risk it, and honestly, if I knew what I was going to go through, I probably wouldn't have had kids at all., Wow! I have never heard this before.
My first is level 3, 3 years later my 2nd NT, 1 year later my 3rd level 3., Someone else posted this, but there *is* a paper showing a correlation. This controls for age at par-nutrition, so although it's the case that increasing age and therefore increasing gap increases risk, it suggests the short gap by itself is a risk factor.
[https://pubmed.ncbi.nlm.nih.gov/29164825/](https://pubmed.ncbi.nlm.nih.gov/29164825/)
This is only correlation, but it's consistent with findings that in general you should wait at least 18 months before conceiving again, because it's correlated with many other health risks, such as preterm birth and low birth weight:[https://www.marchofdimes.org/find-support/topics/planning-baby/how-long-should-you-wait-getting-pregnant-again](https://www.marchofdimes.org/find-support/topics/planning-baby/how-long-should-you-wait-getting-pregnant-again)
It may be that i.e. low birth weight is additive to genetic risk factors for autism and "tips" the threshold in some small minority of cases. That's just supposition.
If you wanted to balance increasing age with gap, then you'd need some sort of complex model that takes into account both. As far as I know no one has written one. But in general I think there's strong evidence that, regardless of autism risk specifically, it's a good idea to follow this recommendation, as there's robust evidence for its effects on prematurity and birth weight- autism risk aside., Actually there EXIST research where they found that the next child was more likely affected if they spaced pregnancies to less than 3 years., Same., May I ask, do either you or your brother have ASD? That's some high odds that all children and cousins have ASD., Which levels are your kids on if i may ask, The odds are higher because it may be genetic rather than random., Same level or different, Meet with a geneticist, they might be able to determine if the ASD is caused by a known genetic mutation or not, and whether it is or not they might be able to tell you statistically what your chances are with a second kid based on family history etc, I've always heard that an "older" mother equals a higher chance of having an ASD kid., This is interesting considering the genetic factor from the father. I’d love to see a study controlling for the above + same father / different father (both ASD and neurotypical), Interesting. My background isn't in science but isn't that an extraordinarily small sample size? It seems that realistically they're only drawing that conclusion from 100-200 people., Can you share this? I wasn't able to find anything., I have 2 and my brother has 2, all ASD. We're not diagnosed, but when my first was diagnosed I started reading books about it. I saw a lot of my childhood in those pages. Definitely genetic for some types of ASD, My brother and I both do, as well as our father and all of our uncles (his brothers.), Im not sure we have levels here in the UK? If so I have never been told a level for any of my three. So I’m not quite sure how I’d describe that. My daughter who is 9 is know and severe with a PDA profile and adhd, my daughter who is 5 is also known as severe and my son mild asd severe adhd. If that helps., I would definitely ignore it if it weren't for the fact we have very large, robust studies showing <18 months is bad for other reasons. It might be the specific link between short inter-pregnancy interval and autism doesn't hold up. And even if it is real, I don't expect to have a big effect size - to explain very many autism cases. That said, nor does age at parturition.
The reality is that if you really want to prevent autism in future pregnancies you're not going to get very far without polygenic scoring of embryos, and we're not really at a point in genetics where we even have enough variants to make a big impact there, either. I've had both of my children full sequenced and my neurotypical daughter has a higher polygenic score for autism than my autistic son., And there's plenty others but I don't remember anymore which ones I've read.
If you need help to get the full article there's the sci hub way
|
Is it wise to have another child, despite your only born is on the spectrum?
| null |
I think it depends on the level of support your child needs and how much you can handle. I had a low support needs child and had another child who is also low support needs. It’s been great but I know not everyone has the same experience., We had genetic testing first before deciding to have another child. It's good to be able to rule out Fragile X and other highly heritable forms of syndromic autism. Once you're ruled out syndromic autism then I think you've only got around a 10% chance of having another child on the spectrum. And even if you find you're a carrier for Fragile X or another syndrome, you can do IVF if you'd prefer to screen for these syndromes. Obvs there's no genetic test for non-syndromic autism. But remember, the spectrum is huuuuuge. So even if your oldest child requires lifelong care, then another kid on the spectrum could be able to live independently as an adult. And also worth remembering that anybody can have a disabled child. I've met plenty of kids who were injured at birth or were disabled by meningitis as babies. Anybody who decides to have a child needs to be prepared to raise a disabled child and be a lifelong carer!, The therapist who gave my son his diagnosis said there's about a 20% chance your second child will have autism (if the first child is diagnosed). So I guess it's about weighing your options and acknowledging you may get another child in the spectrum who can have it more or less severe than the first child. We had our second child before we got the diagnosis of the first child. She doesn't show any signs of autism. But I don't want to have more children out of the same fear., I love my son so much, but having him opened my eyes to how unpredictable parenthood can be. I was not in a financial, emotional, or physically capable place to Have a child, much less a disabled child. My son does not have super high needs, and so I can handle things with just him. But I know I couldn't handle much more. I'm not willing to risk the possibility of having a more profoundly disabled child. Not only would it not be fair to the child, but it wouldn't be fair to my existing child because I simply couldn't handle it.
That's a personal decision though, and I don't judge someone for choosing different than me. I know there are people more equipped to handle it than me., I had a second child before knowing my son was autistic. She does not have autism (as far as we know), she’s two and a total butterfly.
There are so many factors to take into consideration. I think you have to sit down and work it out. Will this keep my child from receiving proper care? Can you handle two autistic children? If you are scared to have another ASD child, I wouldn’t take that chance. We decided not to have a third child because it would not be fair to have our attention split among three and having one who needs more attention (medically and academically)., I think it definitely depends on the level of support your first kid needs. My daughter has *very* high support needs, needs to be supervised 24/7, has a host of extra health issues - we were told the chances of a second kid having the same chromosomal disorder as my daughter were 1 in a billion type thing. My late wife and I did think about it, before our daughter was born we always thought we would have multiple kids, but that just wasn’t feasible now. I don’t mind, it’s not our daughter’s fault, but it would’ve been unreasonable and unfair for our second kid given our personal circumstances., My eldest son is 7 and has autism, maybe ADHD, we didn’t have that one diagnosed. But he has trouble sitting for long periods of time. His conversations are just nouns he mentions, I’m lucky if I get a phrase or sentence.
My daughter is 2 and a half, she’s neurotypical and loves to talk.
It’s a gamble for sure, and I cannot gamble again. There’s only two of us, and it’s hard to divide attention to between the two, although my son just loves to watch TV and play with clay, so he doesn’t need much help other than wiping his ass and even then he can open the bidet and use it, he’s been potty trained since he was around 4 or 5.
I’m just more frightened about his safety with people that are bad and his eloping behavior. He can get food eat on his own, but we still got to bathe him and brush his teeth., We had our second 4-5 years apart.
We started the autism journey with our first a the 2 year mark. It took as a long time to have a second and we where okay with the chance because of how sweet and wonderful our first was/is. We didn't think he was that bad but now people are telling us he's a LVL 3? He needs resources but I feel he will be able to live a mostly normal life. I think the next few years will help determine that.
Our youngest is two now and ahead of all milestones and talking in full sentences vs our older son who was essentially nonverbal minus a handful of words until maybe 3-4. Our older one still needs a lot of help but is doing okay. Talking a lot more than a year ago and starting to read, write, and spell. All improvements in the last 6 months.
It's very tough. I think for me our first was soooooo busy and stressful. He slept horrible the first year. 1-2 hours first 3-6 months. Didn't sleep 8 hours until 8-10 months. Didn't walk until almost a year and a half. Started hating foods around 3 so that added challenges. Potty trained pee around 3. Potty trained pooping before kindergarten. The amount of reading we did without any show of benefit from him alone was defeating. Things are still battles some days, he has to be coached because he cant wash his hands or body well, can't wipe well, can't brush teeth well, can't prepare his own food sometimes. I understand not every kid can do these things, but most can do them without help. He still needs a lot of hands-on help. It's exhausting.
Appointments multiple times a week or daily. Which always interferes with scheduling and nap time. Then theirs the guilt that you aren't doing enough. Honestly compared to our second our first with autism is like 3-4 kids worth of "extra stuff". Don't get me started on how IEP meetings are. They literally point out all the bad stuff and if you don't have a great team, like we did for the last 5 years, it can't just make you feel so helpless and defeated.
When it came time for our second I was ready but physically and mentally just the lack of sleep alone destroyed me a bit. He still isn't sleeping but he's so easy with normal kid stuff. I can totally see why parents have multiple kids after their first being NT, he's like a self teaching sponge. Where our first was an absorbing sponge that has like a delayed expression for a year or two with results lol.
It's just 1000% easier with a NT kid.
That being said. If our second was on the spectrum as well I think I would have had a really rough time., Depends how much you can take. Our first is lvl1 (altho ADHD) and the baby doesnt have the same development delays or traits as her brother BUT being a regular baby she is too much. Shes really different from her brother in the sense of - she's always climbing on stuff always fall down hurt her teeth her mouth on falls and she cries really really loud. She appears to have sensorial issues but express herself really good (unlike her brother that has the passive profile).
Now regarding behaviours and situations between them, sometimes I think was a good idea because for the older one is like an intesive course of correcting unwanted behaviours. Since he has her around all time we can try to teach him what he can or cant do with other children and people. The baby suffers because always get hit, pushed, etc but she seems fine I think they gonna be good friends.
Im struggling with the age gap tho - 6yo and 1yo. She wants everything he eats drinks and play and she just cannot as a baby., I mean, are you willing to deal with another ASD kid?, There's a different answer for everyone. People consider things like their living situations, child care, finances, mental health, life goals, etc. For me, I knew I'd regret it if I didn't try for another and I also knew that even if my 2nd child was exactly like my first, I would still love them so so much (just like I do my 1st). My 2nd just turned 18 months and she definitely completed our family. She and her brother are really good for each other too. So far, no signs of delays or autism in her, but anything could happen still., I love my second kid so much, but having another does add to the stress and your older autistic kid must adjust. My NT younger one (four years old) doesn’t understand that his brother (six years old) has autism or anything different about him. So when 6 is loud (trouble with volume control) he thinks he’s yelling at him (argument ensues and often leads to full blown meltdowns). When 6 has a meltdown, we often have two meltdowns because of the noise. 4 doesn’t understand why 6 doesn’t want to play with him as much and why he’s so rigid with rules of games. Just a bunch of little interactions that make it a bit harder to parent. But it’s doable. I do think my 6 year old autistic son would have thrived more as an only, but maybe having a brother has helped him in ways we don’t realize too. In any case, we wanted to have two kids and it felt right for our family. They’re both very delightful and we feel we get two different styles of kids, which is cool since we don’t get to experience having two kids of different genders., I would say it depends. Can you manage 2 of your current child? If the 2nd had higher support needs than your first could you manage? Could you afford therapy n services for 2 kids. No guarantee that baby 2 would even be ND but it's good to consider. I personally wouldn't go past 2 ND or not. Kids require alot in general lol., Others have put really good advice about the financial and the mental load/toll it takes so I won’t repeat it.
I will say in our experience we ended up having 2 more after our son (making 4 in total). While some days it’s hard, my son has really grown up and blossomed. Our doctors and therapists also say that having siblings is probably what has helped him so much. He’s 5 and has a NT 6yr old sister, a 10 month old little brother and another sister on the way. I was worried when our last baby came how he was going to act because he can get really grumpy at times but he’s done amazing with the baby and has more patience for him then he does anyone else in our family lol. In our experience it was really good and I don’t have regrets. I was also worried about having another child with autism but the thing is now I’m experienced with it and know what to expect if it were to happen again so I guess that helps. But it is a roll of the dice for sure.
Also depends how severe your child is. Our son was pretty severe at first but once he got to 4 he mellowed out and started talking, was able to be potty trained, and showed a lot more independence and I think that’s why we were comfortable bringing in another child. But if he was eloping 24/7 or hurting himself/ others and showing severe cognitive impairment than I would say absolutely not., Probably not but we did it anyway. My 4 year old son is level 3 pre-verbal. My 8 month old daughter so far seems to be NT., My daughter is low support, and I waited 6 years to have another, not because she's autistic but because I was so young when I had her. My second was more significant support and nonspeaking. I don't regret it at all. They get each other on a deep level and it's an absolute pleasure to be their mother. Now I am done at 2, for one I actually fear having a child NOT on the spectrum, because they definitely would get lost in the shuffle lol, and two I'm just done. I have one of each and while I don't regret either of them at all, having two kids on the spectrum is not easy. You have to know if you will be able to handle it because I believe the statistics after you have one is 50/50, correct me if I'm wrong of course. I love having autistic kids though they both show me the world from an entirely different lense., I have a 3.5 year old level 1 who for sure it’s difficult but it’s not as hard as a higher needs and I find him improving every day. Now I have a 7 month old and so far the differences are night and day from my first born. He might still end up autistic as well but lots of good signs early on.
It has been very hard so far but that’s just life and it will get easier when the boys are over 4, It really depends on the level of help/need your kiddo requires. You don’t want to spread yourself too thin and be struggling to stay sane. We were in the same position with our firstborn and wanting another child but wondering if we should. He’s five and nonverbal. We ended up deciding to have another baby and she has been very helpful for him. He now is obsessed with his pokemon plushie (a Kadabra for those wondering) pretending it is the baby. Kadabra gets strapped into various baby things and gets taken care of haha. He has also shown more interest in playing with others now. It may not be the same result for you depending on your little one, but having a sibling (after an adjustment period) has helped my son., Me and wife thought it would be a great idea, never thinking about the chances of our daughter coming out with autism, we were a bit selfish I guess. My son is 5y and is not high need probably medium, and our daughter turned out to be on the spectrum as well. She’s less severe I think but what we didn’t know was that if your first kid is autistic the chances of the second being on the spectrum goes up by a lot (according to the doctor). So here we are., I feel this I didn’t know I had multiple kids on the spectrum until about 4 years ago. But I for many years wanted to try again for a girl I had 4 boys. I was conflicted like this may not be the smartest decision but I knew it was the right one for me. I did have a girl and she’s amazing but it looks as though she’s going to be more high needs than my others probably level 2 or 3 compared to my boys who are all level 1. I’m more tired and overwhelmed than I expected to be it could also be that I’m almost 42., We did but we spread them apart (about 4 and a half years - was aiming for 5-6 years but was more fertile than I thought) so by the time my youngest was 8 months my eldest entered kindergarten and had the services there. My kiddo has fairly low support needs (I think that’s called level one now?). My kids aren’t close with each other but my eldest has a personality where it would have been MUCH rougher for her had they been close in age. My younger is in therapy since 4th grade for anxiety issues and her therapist feels that it’s a must for siblings of ASD/special needs kiddos so that’s something to keep in mind., it’s hard enough having one child….. even when the child has no condition it’s hard… $$$$
america makes it hard, Definitely depends on your support! I have zero so in one and done for sure, NT, ASD, ASD here. I rolled the dice, figured I had a 50/50 shot and got another amazing kid., I’m currently 28 weeks pregnant with our last, but my son didn’t get diagnosed until end of November. But I don’t regret that I’m having her, it’s just making me plan smarter for when she’s here, I wouldn’t have had another kid if I had known. But it’s also our fault for getting pregnant with our 2nd so quick. My first is level 3 and most days we just can’t get out shit together. Also financially we didn’t realize that we would be on a funding waitlist for 6 years so we have no access to ABA and can only afford 5 hours per week. Anyone should also be prepared to have a child with a medical condition or another disability but I’m just being honest here.
Think of it this way,can you hand another kid exactly like your first or more severe? If it’s a yes, there is your answer.
I hear spacing out your kids a little further apart can lower chances a bit., Just assume your second will have extra needs and if you have the resources then go for it., This question gets asked a lot on this sub as well as trying to know how much support your child will need in x years. It depends on the person and so many other factors. The truth is that everything is a gamble. Genetics are a roll of the dice. Even parents of NT kids are not guaranteed a “perfect” life. You just have to do what feels right to you., We had one with very low needs and then the 2nd requires a lot more.
I'd always hoped for more kids but I think practically I don't think we could cope.
We might leave it a few years see how far the youngest can develop and then consider adopting as biologically would be too late., I got pregnant of my 2nd before we got the oldest diagnosis. My oldest has lower support needs and having a NT little brother has been such a blessing. However had the little one also been ND I’m not sure if I could handle it., Personally I couldn't do it, but I think each person will feel differently and based on the needs of your child., Both my kids are autistic and one also has ADHD. It can be a bit stressful sometimes, but they are both lovely kids and they are great friends because they have similar play styles and my older daughter loves younger interests so it gives them more things in common., If I knew my son was autistic when I had his sisters, I wouldn’t have had another one. It’s hard raising 4 kids with autism. I wouldn’t wish it on anyone., Depends on your appetite for risk, financial situation, psychologic makeup and support structure., Both of my children have autism I stopped at two. I have talked to many other families and some only have one child with autism. My kids were in school with quadruplets that all had autism. You just never know. Good luck, Such a difficult decision. I think it depends on so many things…
- is your relationship strong (could you handle two children on your own if the relationship were to break down)
-could you financially support two children with ASD (therapies etc)
-would your first child welcome or resist a second? (not necessarily a deciding factor, but it could add to YOUR stress levels. Mine resisted for the first year but now they are good friends)
-if your child is NT, how much will their older sibling’s behaviour impact them? (our second seems quite anxious and I worry that it’s due to his older brothers meltdowns and unreasonable anger towards him in an argument)
-ultimately it’s been great for us to have two. Having the second helped us to realise that our first needed a diagnosis because he was so incredibly easy in comparison. If we had had a second just as intense I would probably be saying something different., Not for me. Late 30s and I'm sure we would not be putting forth our best genetic materials, Something to consider: my eldest, who is AS1, can be very hard on his brothers. It's also not possible to keep things fair in terms of how much time, energy, and accomodations he gets compared to them. It's stressful and exhausting how much we worry about whether our younger two are suffering because of him, either directly from his behavior towards them, or indirectly because he just demands more time and energy. I sometimes feel very upset because they deserve a good childhood! And I feel like we fall short, maybe not all the time, but more than I can accept. I love them and I'm grateful for having them, but it's hard to feel like I can't give them what they deserve., I have a few kids, with my oldest being the only one who’s officially diagnosed with autism. To be honest, he was probably one of the easier of my children, and the ones that have not been diagnosed; ended up being more difficult.
You can’t really predict what type of child you will have, how well they will listen to you, or how well they will get along with one another. You also can’t predict whether or not they will have autism, or other health issues also; but given that you have a child with autism already, the chances of them having autism are higher.
I think the biggest question is, do you think that you could handle the child that you have right now, with another child, who is just like that, or requires more support?
I know that if I had a choice, and didn’t get pregnant with an IUD in, I would not have had another child after my second daughter was born. Not that I regret my final child at all, or that there is anything wrong with the way he behaves, it just hasn’t gotten easier as my daughter has gotten older.
They also tend to feed off each other, behavior wise., Some people are of the thought that if they don't have a second child, who will care for the first once they are gone. It's a selfish reasoning but I tend to align with it. The greater good, as they say., [deleted], Three kids. Oldest NT, though his school now suspects he may have ADHD. Second is ND. Third is NT, though still young enough for that to change. Conversely, my friends, both NT, had a child with Edwards syndrome. Every kid is a roll of the dice on what you have, but if you have love in your heart for another, go for it. I am., We had a second before we knew our first was autistic. At first it seemed like our second wasn't on the spectrum. But now that he is older we are seeing other very distinct autism signs. His needs will be different from our first. But it's still autism whichever way you put it. On top of that, there are way worse things for a person to have than autism. Our second also has very bad asthma and life threatening allergies (epi pen for life.) I would trade both of those for autism any single day.
Moral of the story, if your kid doesn't have autism, it could still get other things to make life difficult. If you want a second child, don't let autism stop you., Thank you dear, I need a lot thinking..., Both of my boys need lots of support . Their autism is very different from each other but both need significant support. They are 21 and almost 23 now. I became a single parent in idk 2010 maybe. It's exhausting at times., Was your child ever nonverbal?, This. So much. I know this is veering towards the philosophical but nothing is assured in life., What is syndromic autism?, We were getting my oldest diagnosed and back then it was hard to get a Dr to actually diagnose your child. We moved to 3 different states before we could actually get a diagnosis. On the day of the appointment my baby sitter didn't show up so I took both kids. After they evaluated my oldest they asked if I wanted my youngest evaluated. Their autism was so different and my oldest was so profound. I didn't see my youngest struggling too. For example I was trying to potty train my oldest and my youngest started using the bathroom. My youngest did everything early. To this day he is always learning something. He is now teaching himself languages on Google translate. He can do a whole episode of sponge bob in Arabic but can't tell you why he is upset. Good luck to your family, Exactly our case., I just wanted to relate to your comment about the difference in ease. When our eldest (ND) was difficult as a baby and toddler, we were like “well everyone says how difficult parenting is”. Then we had a NT second. Could parent him with my eyes closed. That second baby is a piece of cake and I totally see how people have big families with NT kids. It still blows my mind when I ask my little guy to do something and he just does it (without arguing or having a meltdown) and I feel like Mary freaking Poppins., Hi, I have an autistic 18-month-old son (you can check my post history for details) and I’m just asking other parents if they can recall how their children were doing developmentally at his age. I guess I’m just looking for hope. Would you be willing and able to provide basic info about how he was doing at that age with expressive and receptive language, joint attention, playing, stims, eye contact, pointing etc?, I'm just scared, of having another child with ASD..., Thank you !!! I'm really happy for you and ur family.. 💝, Someone told me, but in a blunt way: " You are stupid if you think of going for a 2nd child, you will be a complete idiot", Thank you for sharing a beautiful perspective that can be lost in the stress of caring for ND kids. Mine shows me the world through a pretty magical lens too. Your children are lucky to have you as their parent., I don’t regret my daughter either, should have probably noted that. I just mean she has become more work as she has gotten older, instead of less work as she has gotten older; so in retrospect, she probably should have been my last child. If I didn’t have the patience and education I do, I don’t think I’d be able to handle both her and the youngest child., Yeah but you have to realise, your first child sounds mildly autistic, if your child was severely autistic you wouldn’t be saying the nt children were harder, I feel like this is a widespread misnomer perpetuated constantly in this sub reddit, people compare mildly autistic children, or a specific autistic profile - usually sensory avoiders, to problematic nt kids and claim this correlation is indication that nt kids can be harder than autistic children, when really it’s only in extreme cases.
Not trying to take away from anything else you’ve said, but I just think this is a very common misnomer with people that haven’t really experienced severe problematic autism and I think this is why many of the parents of level 2/3 children want a completely seperate category, cuz our experiences are almost of 2 completely different illnesses.
I used to look after my cousin who had severe adhd and was extremely problematic, but I tell you my life would be easy if my son could talk and only had problematic adhd behaviour, let alone if he was neurotypical., But this still only adds to the chances of having a child on the spectrum - I think they say 14%, although I feel it’s much higher.
There are fertility experts that can mitigate these things if there’s a correlation with the mums health, I can imagine it would be exhausting. I think if my son had more needs and my situation was different, I would have chosen to stop with just him. It’s a very personal decision and I respect anyone’s decision to do what is best for them., No. Neither are., When autism is caused by a genetic mutation that can be tested for. Examples: Fragile X syndrome, Angelman Syndrome. Our doctor was convinced that our son had Angelman Syndrome so he recommended testing for this right away. This came back negative and we then tested for fragile X and also had Whole Exome Sequencing too, which would have picked up rarer mutations. They actually found a couple of mutations that me and my son both have that could be pathogenic, but there are currently too few known cases of these mutations for us to know if they are definitely pathogenic. Armed with this information I decided I'd ruled out as many serious conditions as I could, and decided to have another child., >He can do a whole episode of sponge bob in Arabic but can't tell you why he is upset.
Pretty much the ND struggle in a nutshell lmao, Exactly. Our youngest is still feral at times and I think we are going through the terrible two/threes which we didn't have with our first.
Like we literally show him something once and he's got it. You say something once and it's locked in. It is crazy.
That said. Safety wise our oldest is way better. I think that is why he is so behind physically with something because of it looks dangerous he doesn't want to do it.
Our NT youngest will swan dive into the hoover dam if he could., At 18 months he had one word and then he stopped saying it. At 2 we still had nothing.
So there wasn't a way to gauge his receptive or expressive language. He was pretty mellow and we just need his needs because if he was angry or upset 99% of the time he was tired, hungry, or thirsty.
Eye contact was poor. He would look at you and smile but nothing compared to our younger one. His eye contact is still not great some days. OR he is 1inch away from our face stimming from excitement.
Playing was hard. The only engagement we could get was from tickling, picking him up. And when he learned to walk he liked being chased. Any other play was very individual.
His stimming has always been more vocal and less physical. He loves scripting and reenactment vocally.
We had almost no change for a long time.
Slowly. And I mean really slowly we started to get 1 word for descriptors for things.
He would say water or milk when thirsty. Or eat, apple, crackers, sandwich, when hungry. We tried pictures, Tablets, books, or whatever we could think of to try and understand what he was wanting.
I don't think it was until 3+ years until we finally started getting things like "I want milk" but even then the language was very scripted and he was still learning how to use it. So he would say that but maybe wanted juice or he was tired.
It was a long road. We still aren't conversational yet but he can tell us most of his wants. He understands and follows directions pretty well. He can finally tell us where he hurts if he is uncomfortable. He still can't wipe his poop but he uses the bathroom on his own. He eats on his own. He gets dressed on his own. He's gotten really good at drawing in just the past year he went from hardly writing to drawing realh decent picture of things.hes starting to read letters and words much more. Much of this has been in just the past year. We've been told he's a LVL three but that his receptive intelligence is equal to his peers at his age. But I think he's more a 2.
My biggest advice. They see and absorb everything even if you don't think they are And I mean everything. You might say a curse word once but in 2 years they will drop it appropriately when they start talking.
If you get frustrated or angry they might not be able to express that now but they watch and learn and eventually act and react just like you. L
Positive discipline and positive parenting is the biggest thing you can do if and/or when they become better at communicating. I
We are still undoing things that he learned from us due to us setting poor examples.
I can't promise you if your kid will talk. No one in the autism/medical world will ever give you straight answers because of how drastically kids can or can't change or that's been our experience. It can be lonely but in many ways our older son was 1000x easier than our neruo typical kid. Having a neruo typical kid also made us realize how easy other parents have with regard to communicating and learning.
I'm happy to answer any more questions. Stay strong. One day they are 18 months and then next you are putting them on the bus., There's a higher than average chance of that happening., My first born son is perfectly 'typical'; dare I say popular.
My second born has ASD level 3 and a Global Developmental Delay.
I had no idea my second son would have special needs.
Do whatever feels right for you. 💜, Dang that's harsh. I say weigh the pros n cons. Assess what you could handle should baby two be ND. Plan for worse hope for best. There's always a chance they'll be NT but kids are alot either way really, That person sounds really ignorant and judgemental.
It depends on the individual, the child, circumstances, support, etc., I don’t think your stupid. I do think you need to consider if you’d be able to handle two ND kiddos. That’s always a possibility. All told, if I knew my first born was ND when he tried for number 2, we wouldn’t have tried for number 2. My second is NT and I love her dearly and am glad we had her but that’s the truth., My daughter isn’t NT, Very interesting. Can all autism be identified by a mutation or replication etc on dna? Or just the syndromic type? Why are so many kids being diagnosed now? Yes the spectrum is “widening” but also so many more kids having clinical presentation. I know a teacher that has been teaching for 40 years and she has never seen as many autistic kids like she has now. Equally girls and boys., I am the exact opposite of you. First born has same diagnosis as your second born. My second born is also "typical".
I was 6 months pregnant when I found out that my first born had autism. I never would have gotten pregnant if I had known. But my second son has turned out to be the biggest blessing (to me and his older brother)., My NT toddler is more needy and wants more attention than my 7 year old ND son, but when he was her age, oh man, I can tell you it was ROUGH., She may not be diagnosed yet, but she’s definitely NOT neurotypical. I can assure you of that. She’s female so she has been assessed but they disregarded her unwillingness to speak as being “shy” when really it’s being nonverbal, and ignored many other symptoms because they didn’t look like they would in boys, How did you find out during your pregnancy?
I didn't know autism was something that can be detected during pregnancy now?, can she talk? Cuz If she can talk and choses not to - that’s not non verbal.
Also the milder the autism the more ambiguity. With severe autism there is no question.
What makes you think she’s not nt?, Already pregnant with second kid when they found out about the first one, My first comment response was super long, so I’m redoing. First I want to say that you seem like you want to argue, and if that’s the case you have the wrong person.
I believe she is autistic because I have an extremely strong understanding of what autism is, given I used to work in Autism Intervention and hold a few Psych credentials.
Here are the characteristics/symptoms:
-Minimal eye contact
-Has speech delay (moderate/severe)
-Has difficulty speaking in social settings
-Has difficulty managing behaviour in social settings in comparison to her peers
-Has difficulty understanding and appreciating danger; and will just DO things with 0 regard for what may happen
-Stims (jumping and spinning are her go to’s, but also hanging upside down so I got her monkey bars for inside the house)
- STRONG sense of justice - she does not know when to stop or back down, and when she’s told someone is getting angry, or to leave someone alone, she doesn’t seem to hear/care. It goes right by her and she keeps going at the person. This is the most concerning thing for me because I worry about relationships will go for her in her older years.
-Sensory issues with her ears, skin, and also her palate (very restricted diet)
-Very Rigid about things and will not move past a step unless something is exactly how she thinks it should be. This often causes extreme meltdowns which it is hard to then regulate her.
-Restricted interests that she does repeatedly and with great intensity
-Issues making friends or making the first step in a social situation, and often has falling outs with friends which have sometimes become hands on. She has some hands on issues when she is having a meltdown.
Comorbidities of autism and adhd:
- mast cell dysfunction
- connective tissue disorder (likely EDS like they believe i have and are testing me for)
Her dad is dx autism and adhd, and my therapist and dr think I also have autism and possibly adhd. So the chances are very good for her to also have one or both.
That all being said, my oldest child wasn’t easy. He was just easier in many ways, at this age that my daughter is now. He didn’t get harder as he aged, however we have spent time in ER due to massive meltdowns and public stuff that almost resulted in police, due to his age. He has an Oppositional Defiance Disorder dx also because of the fact he almost was expelled from school due to his behaviors. So not easy, just easier in many ways., Thank-you! In my hurry read I didn't see the 'first'., Reddit butchered the format; sorry.
|
Is my 8 month old at high risk for autism?
|
Hi guys
I know there’s been a million of these posts but I would really love your input based on your experience.
My son is 8 months and a week old. He is advanced in gross motor skills, started sitting up and crawling at 6 months and pulled himself up to stand at 6.5months. Lately he has begun letting go of what he holds on to while standing and trying to balance himself.
Eye contact is sort of ok, good across the room and not so much up close which I understand is pretty common. He rarely smiles socially, he does however sometimes smile when approached by my husband or I after a nap (means he hasn’t seen us in a while) he does enjoy peek a boo and smiles/laughs.
When we sit in the nursery with him he is content to play alone but he checks in by looking at us from time to time and also shows joint attention sometimes. If I take his toy away from him and put it behind my back he looks at me and not the toy. He responds to his name maybe 1/3 of the time so am unsure if it’s the sound or name he responds to.
He loves watching his brother and wants to play with whatever his brother has.
He has the tendency to reject being put down for sleep and would repeatedly pull himself back up till he gets overtired and melts down. It takes a while to calm him once it starts.
He cooed and made noises around 2-3months old but went silent till about a week ago he started blowing raspberries and saying ehhh and ahhhhh.
He doesn’t enjoy looking at the mirror at all. Looks and turns away immediately.
We live in Denmark and have had a health visitor come by. He looked back and forth towards her and me, wanting NKG approval which she said was a positive sign. She interacted with him for about 15mins, gave him a toy and he handed it to her when asked and also kept looking at her wanting the connection. She sees nothing wrong except to work on the speech abit more.
It’s different from what we experience at home where he mostly doesn’t play with us. She explains that her being a stranger is more interesting and he’s probably a little tired of us.
Thoughts? I’m pretty confused. :/ I can’t help but feel that something is strange. I actively try to avoid comparing him and my NT firstborn.
A tired mum
|
I just want to say that a lot of the things you are finding to be red flags like not looking in the mirror are not signs of autism. My autistic boy loves the mirror and so does my 8mo. His speech sounds fine. His interactions sound fine., the most accurate autism diagnoses are made after 18 moths of age. its simply too early to tell what's normal baby behavior or not off of what you described. to me it all sounds normal. i have an autistic 6 year old and what appears to be a neurotypical 2.5 year old. everything you described sounds pretty typical in my non professional opinion., Unless he has a sibling with asd he's not at higher risk imo, all of the things you've highlited seem normal development to me, Nothing about this screams autism to me. My son was stimming by 6 months and would not show interest in other kids., Personally, I don't think it's possible to know at this juncture. I was concerned about autism when my son was your son's age. I made a list of signs and showed them to doctors who were uniformly dismissive. Then, shortly after his first birthday, he had what I regarded as an autistic regression (loss of name recognition, reduced utterances, newfound absence of excitement when I got home). I again told doctors, and they were dismissive--they probably thought it was a "boy who cried wolf" situation. Today, my son has autism. To this day, I'm genuinely unsure if he always had autism to the same degree at every moment of his life and the regression is just part of it or if he was somehow at risk (or at risk for aggravation of a mild case) and then backslid. I think basically no one can know. I guess my advice to you would be to keep an eye on it, trust your instincts, try not to worry, and don't feel as though you need to believe any authoritative answer youre given., Hey OP. Any updates with your baby? Hope you and him are doing well., Have you seen anyone to make sure you're not dealing with PPD/PPA?, [deleted], He sounds like a normally developing infant. Making vowel sounds is great. He's practicing for speech eventually., Hello, I am in exact same situation as yours.
Do you mind chatting regarding this?, I didn’t know that! Thanks for telling me., It’s hard to go through that feeling like you’re the only one that sees it…. Hugs., He is doing fine :) 14months in a few days and he can say ‘meow’ ‘’mama’ and ‘bear-bear’, I have reached out for some therapy. I am feeling anxious for what seems like the first time in my life., I can totally understand how you feel. Does your son enjoy peek a boo? If you observe him in a room, does he share joint attention with u while playing with a toy? Does he look up when you leave or enter the room? If you take away a toy (that he is playing with), and place it behind your back, does he look at you or simply focuses on the toy?, Sure you can :), 🫶🏻🫶🏻, It is, but now that I'm on the other side, the way that I see it is that I'd go through anything that my little dude has to go through. I wish he didn't have to go through this, but it's not up to me, and he's a happy kid, and I'm glad that I'm here for him in it. He's my best bud and we have a good life together. I'm sure you will too however it turns out., I had really bad PPD & PPA after the births of two of my children. I needed pharmaceutical intervention to treat the chemical imbalances & therapy to process what I was going through. Having a child is a huge deal, both psychologically & physiologically. Your post sounds to me like that is what is going on. From an outsider, none of it is logical, which is the giveaway for me because anxiety isn't logical. Anxiety and/or depression are liars and they mess with your mind so much. I just want you to know that lots of women go through this and overcome it as well. You deserve to feel relief, not to be consumed by anxiety and intrusive thoughts that steal your joy and occupy your kind., [deleted], He’s lucky to have u as his mum. He’s gonna do amazing I’m sure 💙, Thank you, I didn’t really think about that. I talked to my husband about what you wrote and he also thinks it’s possible from what he’s seen from me. I also didn’t know PPD/PPA can manifest so long after birth…, https://www.wellchildlens.com/video_room/early_warning_signs_results/see-the-signs/early%20warning%20signs/lack%20of%20imitative%20social%20play#:~:text=Peek%20a%20Boo&text=By%20comparison%2C%20a%20child%20on,some%20aspects%20of%20the%20game.
I found these videos quite clear :), I'm his dad but thanks :-), [deleted], If you don’t mind me asking, what were the signs you saw when he was a baby?, The boys in the video are 20 months so your son is alot closer in age to them than mine is. I’d have to wait and see :), The signs I worried about when he was eight months were, for the most part, not things one associates with autism. The one thing he did that was classically associated with autism was wheel spinning.
The other signs were things that struck me as decidedly atypical but that are not associated with the typical case of autism. I can give you more details in a chat if you want, but I strongly suspect that you'll say "oh, this doesn't sound like my kid.", [deleted], Thank you for sharing :)
|
Is my brother autistic?
|
He is 10 and I strongly suspect that he might have ADHD. Apart from always being up on his legs and running around the house mindlessly, his teacher noticed that he stares blankly out the window and often times he doesn’t write down his homework or just forgets. He can understand well but has a hard time paying attention during long periods of time.
Recently, my dad sat him down to study with him and he told him to read aloud. My brother didnt do that and told him that he had to read also. Hes always so stubborn. For example, our youngest brother of 5 y o would hit him and he would hit him back several times. Although us older ones would sometimes back down if we were in a fight he NEVER backs down. What I mean by that is : if you hit him, he’s hitting you back. No matter how slightly hes coming back at you. Not once have I noticed less only more. He doesnt have compassion to how hes hitting he just needs to get it ‘fair’.
The brother of 5 years of age hit him with his toy gun and he hit him in the head a couple times. It wasnt that hard but I was still very angry that he would do that. Nobody of us rest do that kinds of stuff so he couldnt pick it up from us possibly. Whats wrong with him? Is there something other than adhd here?
|
If he needs a diagnosis, your parents need to take him to the doctor. This is a support group for parents of autistic kids, not pediatric neurologists., , We need a bot to post this repeatedly, I’m sorry but he did go and try to get diagnosed but when my mom was supposed to be alone with the doctor to tell her what’s wrong and what she thinks it is and what he does he didn’t want to leave or vice versa to speak to the doctor alone. He practically was silent the whole time. He knew something was up and shut down. You think we didn’t try?, Yes. That, and master list of resources. :-/, I guess I don't see how opinions of strangers on the internet who do not know your brother would matter., Many children with various issues are uncooperative. The doctor needs to account for this. Also, has he been evaluated by the school? They can't officially diagnose but they can find a student eligible or not eligible based on a disability category.
|
Is my mom the asshole for not letting me see my siblings unless she’s in the room
|
I was coloring with my little brother then he went for lunch I came in the house ( I live in the garage) to go to the toilet and my brother asked to go back and color with me and my mum said “ the other day you where smashing up plates and everything I don’t think you can be trusted to be with people without my supervision”I have autism adhd and probably other things and a couple days ago I was feeling really overstimulated (I think I used that word correctly idk anything about my problems but) my head was hurting so bad it felt like it was going to literally explode I couldn’t see anything anymore And that night I was so close to unaliveung my self I had the pills all crushed up ready but I got so angry at how disgusting I was I smashed my own plates in my own room when I was alone (I have my own plates because I’m not allowed to use the same ones as the rest of my family ) then my parents got annoyed because I might wake people up because I screamed when I smashed it but afterwards I felt really bad I did but tbh I wasn’t rly thinking about that Anyways What she said just made me feel even more alienated from everyone else that was the first time I had rly spoke to my brother in almost a year I and I was acctualy in a good mood this morning but now yk when your about to cry and your jaw tenses and you feel heavyness in your stomach I’ve felt like that for the past 3 hours and it probably wownt stop for a couple weeks and I just feel like she shouldn’t have said that especially since she didn’t explain why I have meltdowns or anything she just acts like I enjoy randomly screaming to hurt her but I don’t I hate it I feel bad afterwards but it’s not deliberate I said “ I can’t do this I can’t do this ” for about an hour to myself in my own room until my parents came in and shouted at me for keeping them awake anyways I just feel like she should have said that and I don’t know how better she could have felt with the situation but I don’t think she did it right thing and I want to tell her but I don’t know how
[View Poll](https://www.reddit.com/poll/15ctgrd)
|
I’m going to post the suicide hotline for the USA I see the Canadian one has also been posted. But I will add it here as well.
Suicide Hotline for the USA 988
Suicide Hotline for Canada 1.833.456.4566
Suicide hotline for the UK +44.(0).8457.90.91.92
Please get the help you need. At this point it doesn’t matter who is right or wrong or an ahole. What matters is you get the help you need, OK, lots to unpack here.
How old are you, may I ask? Living on your own in the garage with your own crockery feels very uncomfortable to me, unless you're late teens or above, and it was your choice.
How old is your brother? If young/small, then I can understand why your mum might be concerned for your brother if you aren't able to contain your emotions. Do I think she went about it the right way? No. Do I understand her wanting to keep everyone safe? Yes.
I appreciate we redditors know very little of your life from your post/post history, but it feels as if mum might also be struggling to understand coping techniques /language for having an autistic kid(s). It feels like therapy might be useful or a session with an autism specialist to discuss your challenges and ways you both might deal.
If you were considering suicide (and I've seen your "research for a story" post), you need to speak to someone asap, who can help you cope and put a support structure in place. Doctor, therapist, specialist, helpline, pick any one and talk to them today.
Good luck, and take care of yourself., It's not my place to say what is reasonable as your mom in this situation. What I can say is you need to find better ways of dealing with your meltdowns. I get it. I get meltdowns and I hit myself for the first time in years the other day. If you feel like hitting things, get things that cannot be broken. Pillows, your bed, stuffed animals, a punching bag, etc. As a mom, I would be nervous to leave you alone with your siblings if you were showing aggressive behaviors without control even if it's your own things. We can be accepting of ourselves and our meltdowns without displaying the behaviors you have been displaying. I would freak out if someone started destroying things. It's not just an NT issue. NDs don't feel safe when someone is behaving irrationally and aggressively even if it's toward inanimate objects., So, uh. You need to figure out better ways of managing your meltdowns. Smashing things is not acceptable., @charge_physical explained it well above. I would also not feel comfortable with you around my kids. It sounds like you need to see a therapist that can help you find better coping mechanisms for when you are overstimulated, stressed, lonely etc. The fact that you are also suicidal screams “I need help”. Pls get professional help for yourself., How old is your sibling? How old are you? Are you getting any help for your suicidal thoughts? Does your mom/other parent know? I keep my kids separated when one is overwhelmed and acting in a scary way to the other. It sounds like you and your whole family is in crisis mode; you haven't talked to your sibling in a year, your room is in the garage, this sounds isolating and really unhealthy., Why do you have you're own plates from the household plates and why doesn't your mom try to see what's wrong instead of yelling at you about the noise? Is this a regular thing you've refused to address and they've tried to help and intervene without success or is something else going on?, I'm not sure how old you are but if you are a minor and your parents are keeping you separated from the rest of the house, requiring supervision for you to spend time with other members of the family, AND YET they are leaving you unsupervised with medication that has major risks in your situation, your parents are absolutely acting with negligence. There are MAJOR red flags here in what you're describing, aside from the plates.
About the plates: look, I think you have enough self-awareness here, as evidenced by your observations in the above message, to stop yourself from breaking things the next time you feel the way you did. I think every time you notice yourself NOT breaking things, even though you feel upset, you will give yourself a little more confidence in your power to self-regulate. It's hard, my friend, but little by little your powers of observation, reflected inward, will help you manage life better. By having the ability to self-observe, you've got a leg up on a lot of folks who struggle similarly.
Nevertheless, you need to also talk to a doctor, and share what you're experiencing. If you don't have a doctor to discuss these things with, but you're in school, maybe a trusted adult, school psychologist, counselor, other? If you're an adult, you need to find a doctor. (In the U.S. and you don't currently have a doctor, you may be eligible for Medicaid with your situation.)
Take all the responses you get here with a grain of salt, by the way. Everyone on this sub is going through their own trauma, and you can tell that in the one-sided responses you see here, which are quick to scold (projecting themselves into the position of your mother and defending her actions unconditionally) but which don't seem to pick up on the bigger picture.
Take care of yourself, friend., I don't think this is a simple situation where one person is just an asshole. I can see how your mom might be scared that breaking a plate might be the start of more aggressive behavior, and how she might feel the need to protect younger kids in the house. You know that breaking the plate was just a momentary outlet and you wouldn't hurt your family members, but maybe she doesn't.
Given that, I do think your mom needs to put more work in understanding and supporting you, and getting you the help you need. Shouting at you and keeping you isolated from the rest of the family don't seem helpful or appropriate responses. As a mom, I feel as if one of my main responsibilities is to give my kid healthy tools to self-regulate and deal with their emotions. (And that would be true even if they were neurotypical.)
If your parents aren't doing that for you, how can you do that for yourself? It isn't fair that you have to, but it is your best way forward., If you think She was right can you exaplain why plss :) so u can understand better, I'm so sorry you are experiencing this. Better tools are needed for you so that you can recognize when you're becoming overwhelmed and overstimulated and get out of the situation and cope better before it becomes so painful. Can you identify triggers and what might help to eliminate or cope with them? Like a simple example would be too many noises at once, so always carrying headphones on you.
The difficulty I see with your mom is not knowing or understanding your triggers. She doesn't know under what circumstances you'll be overstimulated or overwhelmed and need the type of release, like breaking a plate. So, she's putting a ban on your brother to protect him, thinking at any moment fir any reason you may need to lash out and inadvertently hurt your brother. I clearly don't know the history or exact circumstances but sitting down and having a conversation about wanting a relationship with your brother, about needing tools to better handle the sensory stress, about what is triggering, etc may be helpful., I've a young child who went through a phase of hitting people and then a phase of tossing phones, toys, etc. We worked through it and I was firm that damaging anything (even if they owned it) was bad. She is probably worried you'd break something of theirs and worse. You might feel bad but she probably feels much worse and responsible for not just you, but your siblings as well. Hope you can work with therapists to address the areas where you're finding it hard because these kinds of meltdowns are not only socially unacceptable, but also dangerous., What I’m hearing is that little siblings are overstimulating for you and/or triggering, and that being around them without mom to regulate the situation can lead to a meltdown. Or has led to a meltdown in the past.
Could you flip this to be a motivator/goal? “I want to work towards having a ‘safe body’ during a meltdown, so I can be with my siblings even if mom isn’t in the room.” You probably already have some meltdown behaviors that aren’t dangerous, focus on taking yourself towards those when you feel the meltdown hit., Your Mom needs advice on parenting autistic children. I don't know how old you are but... if you're under 18, you shouldn't be made to live in the garage. If you're older than that, and don't understand your meltdowns and autism, you need therapy, supports!! A big freaking squeeze, if that helps you 😭
This whole post makes me upset, some comments especially. You smashed a plate of crushed up drugs you were going to kill yourself with, and people are saying "yOu DoN't Do ThAt If YoU lIvE iN sOmEoNe'S hOuSe" it is your parents house who obviously have no idea how your brain works!!!
Everything about this makes me so sad. You need love, just like your siblings were trying to give you.
First off, suicide helpline if you ever need it (Canada 1-833-456-4566, I'm not sure what country you're in).
Second, ME, I will talk to you, if you're comfortable reaching out to a stranger. Vent to me, ask me questions, I don't know how well I can answer but I am not going to judge.
Third, sending you love ❤️❤️❤️, There are quite a few red flags in your mother's behaviour and it's a bit upsetting to see the responses people have given you. It seems people have empathy for your mother but not for you. You may get more balanced responses in other reddits geared for autistic people rather than parents.
I understand that your mother is likely overwhelmed and I would guess isn't receiving support to help her manage your behaviour, but from what you have described you sound like you are very overwhelmed, at risk and in severe need of professional support. You sound isolated, depressed, suicidal and as if you have a very low self-opinion. That's a horrible position for anyone to be in. You must be hurting a lot.
I think that people need to understand that someone can be violent towards themself or to their belongings, without being violent towards others. I have had meltdowns where I destroy my belongings, too, but I would never, ever hurt another person, especially not a child. You have no history of being violent towards your brother, and treating you as if you are dangerous is only going to worsen your self-opinion. Even if she really did feel unsafe leaving you in a room alone with your little brother, there are ways she could have expressed that without placing blame on you.
If you have another adult in your life that you trust, I would encourage you to speak to them., Also I’ve never harmed my siblings at all in my MetLife so I don’t see why she’s have a reason to think I couldn’t draw with them, I do not think you where in the wrong yes it may have been a better move to use something that can't be broken so easy but all and all you did very well.
Everyone has there own way of dealing with a melt down.
I cry alown most of the time but i think we reach this point differently ( by different emotions).
A lot of People can't understand that thaking it out on a object is stress releaving and sometimes is the only way.
This doesn't make you a voilet person.
Sertainly not because you didn't do it when there where other People., I wouldn't feel right voting on either side of this issue with just the information included here. It is obvious that there is a lot going on and you need more help than you're getting (the fact that you don't even know that much about your condition/how you're responding to it says that you haven't been taught the coping skills you need to manage). If I had an older child who had outbursts and broke things when overstimulated, no, I would not want to leave small children in the room alone. Small children are often known for being overstimulating and that could be a dangerous situation. You should not be locked in a garage and kept away from therapies that would help you, though, if that's what's happening. (it may very well be an "everyone suck here" sort of situation, depending on the specifics)., That's not very nice I have autism myself, I didn’t start distroying things tho and it wasn’t irrational I broke 1 plate when no one was near not even in the next room, Why not it was my plate I bought and no one was their when I broke it and this only happened 1 time with 1 plate it didn’t cause anyone else distress not trying to be annoying I just genuinely don’t see what I did wrong, My siblings aren’t the cause of any meltdowns they’ve never been their when it’s happend, >This whole post makes me upset, some comments especially. You smashed a plate of crushed up drugs you were going to kill yourself with, and people are saying "yOu DoN't Do ThAt If YoU lIvE iN sOmEoNe'S hOuSe" it is your parents house who obviously have no idea how your brain works!!!
Right? Can you imagine reading *this many* red flags for neglect and going, "Hmm, yeah, she's in the right!"
🙄🤦🏻♂️, Eeevery so often, whether it happens on this sub or another, there are people who claim that the folks here are either abusive *or* hold no parents accountable when abuse comes up.
I don't think that the people here are horrible by any stretch, and I also think that the idea that this is a "sub full of abusers" is false and a *very* fragmented idea of the reality of the lives of people who post here looking for support.
At the same time, though? Some of the comments here are **EXACTLY** what people are talking about. 🤷🏻♂️, I am not autistic and I agree. If you have never hurt your siblings I don't know what your mom is freaking out about. How old are you op, You have to understand a parent's job is to protect all their children., Screaming and breaking things are not socially acceptable ways of dealing with overstimulation.
When our older kid (3-4 yo at the time) was regularly melting down on a daily basis (screaming/hitting), I did my best to minimize the impact on his younger sibling. It looks like this is what your mom is trying to do. I do not know how old you are, but as you are old enough to be typing this up, you need to be aware that uncontrolled melt downs in teens/adults are freaking scary for other people.
When people get scared, they act accordingly.
This is from a middle aged adult with ASD, by the way., Because it shows a lack of self-control. It's impulsive and could potentially hurt someone if you were not alone. As much as you try to justify it because you were alone, and you did not hurt anyone, and it was your plate, it doesn't change the fact that you lost control of yourself and acted out aggressively. This means you could lose control around your sibling and act aggressively even if you didn't mean it.
I stated that very matter-of-factly so I hope it helped, but seriously please try to get some help if you can. Wanting to un-alive yourself and breaking plates is not healthy, and I think you need someone to help you work through your feelings of loneliness and help find alternative paths for when you feel overwhelmed. If you feel the need to be aggressive to calm down, could you find a cheap punching bag on Facebook Marketplace or something?, There is nothing wrong with breaking your own stuff hell youtubers become famous for doing this stuff
The problem is that you are doing this in someone else's house without their knowledge before hand and put it this way if you had someone in your house who smashed one plate seemingly out of nowhere would you be scared for your children
I get it meltdowns are the worse but you seriously need another way to calm down cause it will cause relationships to break away I am assuming your unders 18 so please don't get kicked out and also become homeless I know this sounds like it won't happen but it could, Are they not in the house at all? Or is mom sending them to another room?, Yeah, I've left this sub now because I found the responses to this post too distressing. Which is a shame because I found it generally helpful. I just can't understand the lack of concern for this child. I at least know my parents would also be horrified by the responses, so it's not a 'all parents think this way' thing., But they sure aren't doing that...., I see your point.
But it isn't a problem i have literaly scream in the car becouse of over stimmulation everyone has a way to co op and i understand how others may see it but i sertainly think that this was a normal way to deal with it if it really waaaay to much.
Not everyone is the same ( i get easier overstimulated then most and i can not alway cry. In those moment you have to do something els because bottling it up isn't healthy. Unless you know a way without screaming never showing emotions punching a soft object or crying that works.)
Btw i bottle it up because there is no place to go al out most of the time would recoment., Exactly. Context matters., 'Someone elses house'... but they're a child. It's their house. And the phrasing of 'scared for your children' makes it sound like the parents don't have a responsibility for this child., Yeah ... I agree. I think I need to step away for my own sake as well, at least for a time.
I think that there are so many people here who project a lot of their situation onto that of others, and as a result don't actually "see" the situation as it actually is.
As an example, they're reading about one instance where some kind of "violent" meltdown occurred, but ignoring the situation that is creating this in the first place.
(That's not to say that neglect = meltdowns, but I highly doubt any of OP's """""behavior""""" would be nearly as bad if they were with kinder parents. 🤷🏻♂️), Screaming in your own car, presumably while you are out, is vastly different than screaming and breaking things in a home shared by multiple people, with minors present., Well when doesn't it because trust me everything has a reason for why it happens, I'm not saying they don't cause they absolutely do however what would you do in this situation say "oh love to see you hope you like your room cause of how much we love and care about you and we don't want to help you to improve your problems or anything" now that is not taking responsibility because a child we grow up to be like how they are raised they will treat their children with the same attitude and they could be better off if they learnt how to see problems with their behaviour and not blaming others, Absolutely agreed. And take care of yourself!, Wait i think you Miss understood a part in the story.
( it was in the garage where this person lives.
This was if i interpret it right his kind of " home "
In this moment thay steped out of the place that coused it and gone back home to break down.
Sertainly they could have used something different to vent there emotions but then again it was there place nobody was there and you need to release some way.)
Btw i don't see how the car is different i could have disturbed People with it ( not that i know of but still), A reason is not the same thing as an excuse. You have agency over your own actions., You can help your child improve without shaming or blaming them for their behaviours caused by their disability. I have meltdowns and have destroyed my belongings due to them. My parents have sometimes gotten angry with me for it, which only made them more difficult to manage because it stressed me out more. (though I understand they responded in this way because they were also overwhelmed and didn't know how best to support me. I know no parent is perfect). What helped the most was them offering to help me deal with the consequences (helping me navigate repairing/replacing my broken belongings) and taking me to therapy so I could learn how to better regulate myself.
You're right that a child will grow up to be how they're raised, which is why it's so important to help children navigate and regulate their emotions without learning to hate themselves.
(As a side note: Did you miss the part where OP said they nearly attempted suicide?? Breaking a plate is obviously not ideal, but regulating by destroying an inanimate object is way better than trying to die. They should be encouraged not shamed.), You too!!!, I do think we are getting only a small part of the story, so will refrain from commenting further., Yes I wish people stopped doing this cause it won't make the problem go away it will just make others start to see your true colours, No i didn't miss the part about suicide I didn't put it in cause their is an underlying problem here besides suicide If you ask me suicide is something that doesn't happen because of just meltdowns it is a combination I am not therapist or anything so I can't comment on how to best respond to this however I do argee breaking a plate is way better than their own life who wouldn't say that
And encourage to break plates no they shouldn't they should get the help that nessacary what sounds like what they need badly someone to talk to is something that goes a long way
I do also want to say that it's important to be careful when you raise a child because how you act is how they will turn out however hating your self could be a sign of depression and that would also mean they need therapy and I do want them to find one cause it will help them not parenting what caused this and regulating your emotions is something that is hard for the best of us to do otherwise we would be robots
Anyway hope this clear up somethings, I see that is fair, I dunno if "true colors" is really the thing here, though...
I used to self harm during meltdowns. It wasn't true colors as much as I didn't have any other coping strategies/didn't understand what was happening or what was to be done about it. Now I have a rough idea, better coping strategies, and it really makes a difference., I am sorry for your self harm but what I ment by that was like blaming others and not thinking it's your own fault sorry for not making it clear and I usually try to avoid those types of people, Ah, got'cha. Yeah, blaming others for your own lashing out isn't productive., Even for minor things like not getting a promotion what you were after cause it is your fault that your not better than the person who got it and of course their are outliers but most of the time it is your fault
Also quick question are you still self harming? If so call somebody the next time when you think about doing so it is not productive and will leave you worse off, A lot of the time it's also just dumb luck, or lack thereof.
Re: self harm- As I said previously, I have better coping mechanisms now., Okay I am glad that you have better copies mechanisms now I was just making sure
|
Is poor fine motor skills common in children with autism?
|
My son is 3.5 right now and I need tips on how to strengthen my son’s fine motor skills.
Is this common is children with autism?
He doesn’t like to pick up “heavy objects” he didn’t even like picking up his backpack but now that we’ve done it every morning he is okay with it! He doesn’t like to color or use any kind of utensils. What are some things that helped your child if they had this problem as well?
He’s in therapy at school I’m just needing some more ideas for at home as well!! Thank you
|
Yes it is. My son didn't like crayons until we got the Crayola Jumbo crayons. In OT, they hide desired objects in putty to work on hand strength., Dyspraxia is a comorbidity., Yes! My daughter has to do OT weekly to improve her handwriting and scissor skills. She does gymnastics weekly, not because I feel like she will be an accomplished gymnast, just because she can use the extra time working on balance and coordination., Yep, OT was actually the one that flag him for autism via telemedicine no less., Yes, extremely. My kid got points off handwritten assignments for bad penmanship all the way through final semester of undergrad., We have this issue too. My son has no desire to color at all, he will do a couple scribbles and thats it. He does try to write now. They write things in highlighter at school and he traces it with a pencil, pen, or crayon. I want to say that the tape the papers down for him to cut as well. And someone else mentioned the hiding of small objects in silly putty to get them to work the objects out. Large puzzles is another thing they do in OT for my kiddo. And definitely practicing how to grip things properly., Very common. Is he getting any PT or OT? Those therapies can help., Very common. That’s why many are in OT., We have this issue as well. My son is about to turn 4 and his recent Ot eval showed his fine motor skills were in the 1% for his age. Even with over a year of OT twice a week, it’s been an incredibly slow improvement for him. Like it took him almost a year to be able to even *hold* a marker crayon etc. We’re working on drawing now but the second there is any resistance, he drops the crayon. Markers he seems to do better with but right now he’s just making dots, but it’s improvement. Slow and steady is what his therapist says. If you don’t have an OT yet, I highly recommend :), Yup. My son is level 1 and he almost didn’t get “enough points” in his evaluation for the dx. He has issues with fine motor skills at 9 still., Yes. My daughter is 10 and has only gotten pretty good at fine motor control in the past two years, and she still has trouble with some things, particularly gripping things well enough to not drop them constantly., Yes. One of my kids struggles with fine motor skills.
The other struggles with gross motor skills 🤣, Thank you! Jumbo crayons are an excellent idea, I will get some tomorrow. :), Ours has us using the yellow color(x-soft) from therapy putty, a few times a week. Also, hiding objects to pull out., 😅 oh my gosh I hate the putty. My kid has taken to stabbing the putty with a chewie necklace. It took me months to figure out what I was having to remove from his clothes and chewie. At first I thought it was paint., I have never heard of that, that sounds scary?😣, That’s what happened to us, No!
It is a condition affecting physical co-ordination. It causes a child to perform less well than expected in daily activities for their age, and appear to move clumsily.
Early developmental milestones of crawling, walking, self-feeding and dressing may be delayed.
Drawing, writing and performance in sports are also usually behind what is expected for their age.
In the uk, a definite diagnosis does not usually happen until a child with the condition is 5 years old or more, even though signs of the condition are present from an early age, they vary widely in their rate of development., Yes it is. My son didn't like crayons until we got the Crayola Jumbo crayons. In OT, they hide desired objects in putty to work on hand strength., Dyspraxia is a comorbidity., Yes! My daughter has to do OT weekly to improve her handwriting and scissor skills. She does gymnastics weekly, not because I feel like she will be an accomplished gymnast, just because she can use the extra time working on balance and coordination., Yep, OT was actually the one that flag him for autism via telemedicine no less., Yes, extremely. My kid got points off handwritten assignments for bad penmanship all the way through final semester of undergrad., We have this issue too. My son has no desire to color at all, he will do a couple scribbles and thats it. He does try to write now. They write things in highlighter at school and he traces it with a pencil, pen, or crayon. I want to say that the tape the papers down for him to cut as well. And someone else mentioned the hiding of small objects in silly putty to get them to work the objects out. Large puzzles is another thing they do in OT for my kiddo. And definitely practicing how to grip things properly., Very common. Is he getting any PT or OT? Those therapies can help., Very common. That’s why many are in OT., We have this issue as well. My son is about to turn 4 and his recent Ot eval showed his fine motor skills were in the 1% for his age. Even with over a year of OT twice a week, it’s been an incredibly slow improvement for him. Like it took him almost a year to be able to even *hold* a marker crayon etc. We’re working on drawing now but the second there is any resistance, he drops the crayon. Markers he seems to do better with but right now he’s just making dots, but it’s improvement. Slow and steady is what his therapist says. If you don’t have an OT yet, I highly recommend :), Yup. My son is level 1 and he almost didn’t get “enough points” in his evaluation for the dx. He has issues with fine motor skills at 9 still., Yes. My daughter is 10 and has only gotten pretty good at fine motor control in the past two years, and she still has trouble with some things, particularly gripping things well enough to not drop them constantly., Yes. One of my kids struggles with fine motor skills.
The other struggles with gross motor skills 🤣, Thank you! Jumbo crayons are an excellent idea, I will get some tomorrow. :), Ours has us using the yellow color(x-soft) from therapy putty, a few times a week. Also, hiding objects to pull out., 😅 oh my gosh I hate the putty. My kid has taken to stabbing the putty with a chewie necklace. It took me months to figure out what I was having to remove from his clothes and chewie. At first I thought it was paint., I have never heard of that, that sounds scary?😣, That’s what happened to us, No!
It is a condition affecting physical co-ordination. It causes a child to perform less well than expected in daily activities for their age, and appear to move clumsily.
Early developmental milestones of crawling, walking, self-feeding and dressing may be delayed.
Drawing, writing and performance in sports are also usually behind what is expected for their age.
In the uk, a definite diagnosis does not usually happen until a child with the condition is 5 years old or more, even though signs of the condition are present from an early age, they vary widely in their rate of development., Yes it is. My son didn't like crayons until we got the Crayola Jumbo crayons. In OT, they hide desired objects in putty to work on hand strength., Dyspraxia is a comorbidity., Yes! My daughter has to do OT weekly to improve her handwriting and scissor skills. She does gymnastics weekly, not because I feel like she will be an accomplished gymnast, just because she can use the extra time working on balance and coordination., Yep, OT was actually the one that flag him for autism via telemedicine no less., Yes, extremely. My kid got points off handwritten assignments for bad penmanship all the way through final semester of undergrad., We have this issue too. My son has no desire to color at all, he will do a couple scribbles and thats it. He does try to write now. They write things in highlighter at school and he traces it with a pencil, pen, or crayon. I want to say that the tape the papers down for him to cut as well. And someone else mentioned the hiding of small objects in silly putty to get them to work the objects out. Large puzzles is another thing they do in OT for my kiddo. And definitely practicing how to grip things properly., Very common. Is he getting any PT or OT? Those therapies can help., Very common. That’s why many are in OT., We have this issue as well. My son is about to turn 4 and his recent Ot eval showed his fine motor skills were in the 1% for his age. Even with over a year of OT twice a week, it’s been an incredibly slow improvement for him. Like it took him almost a year to be able to even *hold* a marker crayon etc. We’re working on drawing now but the second there is any resistance, he drops the crayon. Markers he seems to do better with but right now he’s just making dots, but it’s improvement. Slow and steady is what his therapist says. If you don’t have an OT yet, I highly recommend :), Yup. My son is level 1 and he almost didn’t get “enough points” in his evaluation for the dx. He has issues with fine motor skills at 9 still., Yes. My daughter is 10 and has only gotten pretty good at fine motor control in the past two years, and she still has trouble with some things, particularly gripping things well enough to not drop them constantly., Yes. One of my kids struggles with fine motor skills.
The other struggles with gross motor skills 🤣, Thank you! Jumbo crayons are an excellent idea, I will get some tomorrow. :), Ours has us using the yellow color(x-soft) from therapy putty, a few times a week. Also, hiding objects to pull out., 😅 oh my gosh I hate the putty. My kid has taken to stabbing the putty with a chewie necklace. It took me months to figure out what I was having to remove from his clothes and chewie. At first I thought it was paint., I have never heard of that, that sounds scary?😣, That’s what happened to us, No!
It is a condition affecting physical co-ordination. It causes a child to perform less well than expected in daily activities for their age, and appear to move clumsily.
Early developmental milestones of crawling, walking, self-feeding and dressing may be delayed.
Drawing, writing and performance in sports are also usually behind what is expected for their age.
In the uk, a definite diagnosis does not usually happen until a child with the condition is 5 years old or more, even though signs of the condition are present from an early age, they vary widely in their rate of development., Yes it is. My son didn't like crayons until we got the Crayola Jumbo crayons. In OT, they hide desired objects in putty to work on hand strength., Dyspraxia is a comorbidity., Yes! My daughter has to do OT weekly to improve her handwriting and scissor skills. She does gymnastics weekly, not because I feel like she will be an accomplished gymnast, just because she can use the extra time working on balance and coordination., Yep, OT was actually the one that flag him for autism via telemedicine no less., Yes, extremely. My kid got points off handwritten assignments for bad penmanship all the way through final semester of undergrad., We have this issue too. My son has no desire to color at all, he will do a couple scribbles and thats it. He does try to write now. They write things in highlighter at school and he traces it with a pencil, pen, or crayon. I want to say that the tape the papers down for him to cut as well. And someone else mentioned the hiding of small objects in silly putty to get them to work the objects out. Large puzzles is another thing they do in OT for my kiddo. And definitely practicing how to grip things properly., Very common. Is he getting any PT or OT? Those therapies can help., Very common. That’s why many are in OT., We have this issue as well. My son is about to turn 4 and his recent Ot eval showed his fine motor skills were in the 1% for his age. Even with over a year of OT twice a week, it’s been an incredibly slow improvement for him. Like it took him almost a year to be able to even *hold* a marker crayon etc. We’re working on drawing now but the second there is any resistance, he drops the crayon. Markers he seems to do better with but right now he’s just making dots, but it’s improvement. Slow and steady is what his therapist says. If you don’t have an OT yet, I highly recommend :), Yup. My son is level 1 and he almost didn’t get “enough points” in his evaluation for the dx. He has issues with fine motor skills at 9 still., Yes. My daughter is 10 and has only gotten pretty good at fine motor control in the past two years, and she still has trouble with some things, particularly gripping things well enough to not drop them constantly., Yes. One of my kids struggles with fine motor skills.
The other struggles with gross motor skills 🤣, Thank you! Jumbo crayons are an excellent idea, I will get some tomorrow. :), Ours has us using the yellow color(x-soft) from therapy putty, a few times a week. Also, hiding objects to pull out., 😅 oh my gosh I hate the putty. My kid has taken to stabbing the putty with a chewie necklace. It took me months to figure out what I was having to remove from his clothes and chewie. At first I thought it was paint., I have never heard of that, that sounds scary?😣, That’s what happened to us, No!
It is a condition affecting physical co-ordination. It causes a child to perform less well than expected in daily activities for their age, and appear to move clumsily.
Early developmental milestones of crawling, walking, self-feeding and dressing may be delayed.
Drawing, writing and performance in sports are also usually behind what is expected for their age.
In the uk, a definite diagnosis does not usually happen until a child with the condition is 5 years old or more, even though signs of the condition are present from an early age, they vary widely in their rate of development.
|
Is there an alternative to public school for kids on thr spectrum?
|
My kid is on the spectrum and I've never felt he's been so misunderstood in my life. I get he has high needs but the school made me feel so insignificant. They basically said to me "public school systems aren't made for special needs kids and so with the high amount of special kids we don't have resources and support to really accomodate" which I get to some extent but also WHAT WOULD YOU LIKE ME TO DO ABOUT THAT? Sorry I need to vent, I just feel like no one gets it.
|
Public schools are legally required to provide a free and appropriate education for your child. I absolutely understand that schools are vastly underresourced; at the same time, it's not ok (like legally not ok) for your local school system to not provide options and accommodations for your child's education. If the public school system cannot provide it they need to pay for whatever alternative educational options will meet your child's needs (a specialized private school, etc).
​
Are you able to work with a local special education / IEP advocate?, What a bold admission, document it. They already disclosed they don’t serve special education students in any of their campuses, so just ask them WHERE else? Special Education is a service, not a place. They are receiving federal , state and city funds, how the manage or waste those funds is not your problem. In accordance to LRE laws, the most restrictive setting could be a hospital the least one a general education classroom , in between there’s a full array of options from private special education school funded by the districts to in-home tutoring, its law to accomodate special needs students. they must provide something within the district, so perhaps there is a better fit at a different school?
my son had a terrible experience in 1st grade. the teachers couldnt/wouldnt handle him, so they gave him menial tasks to keep him busy and then sent home all his school work. they literally were avoiding teaching him. he'd be sent to "run errands" to leave the classroom. during his IEP meetings, they called him dangerous for getting overstimulated and upset. i was livid. how do you label a 1st grader as dangerous?! he wasn't walking around with a knife ffs.
we ended up transferring to another elementary school with an EBC special ed class. they provided a waiver for transfer and transportation.
you can contact your district's special ed ombudsman for help with your rights., Currently fighting with my kid's current school to get a referral to a local special needs school. She excelled last year in ESY and this current school has dropped the ball continuously this year.
They are holding on for dear life because they don't want to lose funds sending her to the school she excels at. Get an Advocate. Not having the resources is a tired excuse., Under the Lanterman Act which is federal law says your district must provide a school that suits your child’s needs if the child’s needs aren’t being met by the district school, I have heard of some specific autism schools/classrooms. Just be careful of really investigating any private school you're considering because they legally are not obligated to provide the same protections to disabled students as public schools and can basically kick students out for any reason they want.
Also, if your kid is still at or above grade level academically, I'd really make sure the academics are up to snuff, because a lot of self-contained programs move at a slower pace to the point that students aren't on track for a regular high school diploma/college entry requirements., We homeschool for a multitude of reasons. But if for some reason our circumstances changed and we needed to send our kids to a school, the options for my oldest would be public school or a private autism school.
The public school district by us loses accreditation regularly. They are stretched thin and have very low math and literacy scores. The private autism school is $18,000 a year in tuition. They do have "scholarships" and financial aid, but it would still be quite the financial strain for our family. The religious private schools outsource therapy to the struggling public school system and probably would say no to being able to accommodate my son anyway.
For us, our choice to homeschool (which we decided before we had kids) is just solidified by the lack of other decent options in our area., Honestly, get a lawyer or advocate to advise you., It may be the law, but it doesn't mean your kid won't be treated poorly. Even abused. I know from experience. And I know another kid that got hurt.
Not including the autistic boy, a town over that was being raped every day in the bathroom by an older boy.
F*ck public school!, If you are in the United States, they are required by federal law to provide education to every student regardless of disability. If they can't, they must find the appropriate setting and cover the cost themselves. Remind them that it's against FAPE.
https://www2.ed.gov/about/offices/list/ocr/docs/edlite-FAPE504.html#:~:text=The%20Section%20504%20regulation%20requires,severity%20of%20the%20person's%20disability., The school has resources for it, they just don't want to do it. Get yourself an education advocate to help you if you don't have the knowledge to navigate this yourself.
Go to www.copaa.org and they have a directory of advocates and attorneys., Where do you live? This sub is very American centric, so you're likely to get US specific advice unless you specify that you live elsewhere., Get him on an IEP in public school and then when they don’t provide him services like they are supposed to jam it straight up there ass and hire a lawyer if you can afford one and the town will be paying for him to go to private school. Just be diligent so you can show a history of neglect on their part. It can be done without a lawyer just be careful. They are going to coming at you hard either way for fighting it. This is coming from someone who has experienced this first hand with a kid who is on the spectrum and has a partner who also teaches special education and can attest to the fact services aren’t being met regularly with most kids., There is, but remember, the onus is on *the school* to figure it out. They will say all kinds of off the cuff statements to parents and regret it later. Next time say "Can I get it in writing?" And when you talk to anyone going forward, make sure you referance this exact convo. " yeah on 2/29/24 ms. X said that blah blah blah is this true?" Etc. Make them accountable for every thing they say etc. And don't be afraid to contact your local DOE, because they HATE hearing parents bitch, and shit rolls down hill. Parents have more power than they think., That’s sooo illegal. Wow. The audacity!!!, Where are you located? In my area, my school had a class for special needs class where they do sensory plays with one teacher+ 3 aides, I feel like it might heavily depend on where you are located. We moved to another state because it was obvious to us that our young child was going to get subpar (if any) help in or out of school if we had stayed., I have posted this information in individual comments. I just added a post. Public schools are mandated through the Individuals with Disabilities Education Act (IDEA) to provide these services. Public schools absolutely have and must provide services for special needs students. It’s the law! I’m pasting part of my post here for you. When you search for FACES on Facebook, look for the picture of a head with brainwaves (that’s the best way I can describe it since I can’t post a pic).
FACES is an educational advocacy organization helping parents navigate the challenges they face when schools won’t comply with IDEA (Individuals with Disabilities Education Act). Follow FACES on Facebook for answers to your IEP questions and how to deal with problems when your school is not meeting your child’s needs. You may also contact [email protected]., Yeah someone in your school district is frustrated and said something to you as a parent they should not have said. I get that they are vastly understaffed underpaid and under appreciated but that’s not on you., If you can get that admission in writing or recorded, you can file a state complaint. They're not supposed to be using staffing or funding as an excuse to not provide for your child.
It is sad, the state of schools - but it isn't your fault or responsibility.
If you are in a one party consent state, you can record your meetings with the school. As a courtesy, I would provide the IEP team notice in writing at least 24 hours before a meeting. They don't need to agree for you to record.
I personally hire PASEN for meetings, but they also have a great IEP/504 support page on Facebook where you can get free advice. They can give you pointers on what FAPE might look like for your child. , I don't know where you are but we have a charter school in Minneapolis that focuses on kids with autism. Obviously it is only one school but it could be replicated elsewhere.
[https://lionsgate.academy/](https://lionsgate.academy/), In my state (not sure if this is the same everywhere) a special needs child needs to have an IEP or more in place and that has to fail the child until they’re able to be placed into a school that can meet their needs. Sadly this is why we were waiting until we can’t anymore to send my son to school., Our son is considered “low support needs” even though he’s almost 10 and can’t shower by himself. His school denied an IEP because while they acknowledged his disability, it didn’t directly affect his academics. Meanwhile we have to take him out of class for PT, OT, and psycho therapy every week. I don’t blame the overworked staff, but if you live somewhere that isn’t hyper accepting and supportive, we are SOL
Being a parent of mentally disabled kids is fun. Hell is real. And we only have one, This post is so informative. Does anyone have any helpful links that explain this process., It all depends on your district and how many resources your county has. My area has 5 special schools and none of them were right for my kiddo so he's homeschooling right now. Try to get a meeting with your district head, My parents eventually homeschooled me and it was life changing. If you can feasibly homeschool I'd recommend it for pretty much every autistic kid., You tell them too bad and find the resources. They are just trying to guilt trip you. “Think of the other kids!” Well they need to understand that your goal is to get your kid what he needs and that is literally the point of public school. They can find the funds if they are forced. If they refuse threaten to get a lawyer. They will make it work., Public Schools resources are already stretched to the max. Teachers are exhausted (and under paid) and honestly should NOT be required to focus special needs to your child. They have 30 children to educate already.
There are special needs schools in every state/city. (In US/Aus/UK atleast)
If you want special needs attention you have to take your child to special needs school, you shouldnt expect the public school systems to accommodate your needs. It’s seems unfair I know but it’s also unrealistic expectation for us to think every school can continue to provide high level education to all students if they have to give special focus to a few!, How old is he?, Get an education lawyer. With an admission like that you could probably get the district to pay for private special needs school. I don’t know what options you have in your state. But here in Los Angeles there’s The Help Group and a few other options., During my sons transition meeting, the school district pretty much gave us no info on their special needs program and told us they would have to get to know our child in order to know what to provide him, even though his preschool teacher had literally just told them what he would benefit from. Pretty much told us we would not get any info until we enroll him with public school. Also told us their elementary program is literally at 3 different schools in the area and depending on what he would need he would have to jump from school to school as they deemed appropriate. So all signs point to no public school for us. Unfortunately in my area the only options are a school my husband already worked at where they had untrained staff restraining students and the other is an expensive private school. Already have issues with the IU for just preschool. My area is very conservative and there is no help and the attitude towards children on the spectrum is very poor. We are more than likely homeschooling, while regularly attending ABA, speech, day trips, homeschool conventions, etc. My husband is about to get a second job and I will be Doordashing on the weekends to make it work., I love close-ish to Savannah, Georgia and there is a school for autistic children called Matthew Rearden. I only hear great things from them. You might see if there is something similar in your area., It is true that public schools can’t handle special needs kids, at least in my experience. But they are required to by law as far as I understand it. This is what lawsuits are for, but they are also a lot of trouble. I don’t know any easy solution except to organize and remain very loud at things like school board meetings., Going through similar issues with my child and I just don’t feel like the public school environment is a safe place for them., We are applying to a private school (for kids on the spectrum and other challenges) for our son. It's going to be expensive, but the public middle school was a nightmare, so we pulled him out and put him in an online school to finish out this year. We feel this school (and our second choice if he doesn "meet the requirements) will give him the best chance for a successful life.
The public elementary school was able to accommodate him, but the public middle school was a nightmare he was being bullied and getting into physical altercations multiple times a week. For his safety, we had to pull him, and thank goodness we were able to get him into the online school mid-semester., Legally and should doesn’t mean they will., This is true, however you need tangible proof that they are not competent which can be difficult to prove. Schools are honestly heartless in this way. My husband's sibling had been straighjacket restrained in 1st grade for not sitting still, my in laws sued the school district and they were forced to pay for private school until they graduated., >they must provide something within the district
At least around here, they must provide an appropriate, free education in the least restrictive environment possible, but that doesn't mean in the district. I know some kids who are bussed to the neighboring state (45 mins-1hr) because the program they need isn't available in ours. There are also some kids who get "non-public placement" where the district basically pays their tuition at a private special needs-focused school., I’m in upstate NY, when I go to the website for the capital region, parent advocacy group it is literally a gambling game website they clearly lost their domain and this information is still being made public. I called a couple other places one of them. I got three different instructions for extensions because when you call the main number it says listen to these instructions carefully they have changed I push the correct extension to be told that that person no longer works there and I have to call back and use a different one I called back and use that different one, and the same thing happened again, the other number for another parent advocacy group was just totally dead and the one single place that I could find and leave a message hasn’t called me back and I have to call them again. It’s bullshit. That schooling is done through the government and it’s not a interest at all to help parents. It’s only volunteers and I can’t get me help. I literally am just navigating it alone. the school he is in, is now 3/10 & when we moved here in 2017 it was 8/10. Also, it’s TSI (targeted school for Intervention) on the NYSDOE website. Disabled kids are suspended at three times the rate of GenEd kids And!! Among other things, my son is autistic but they don’t ‘have any autism labels’ (or workers, or staff) so they just mark all the autistic kids as emotionally disturbed or has a behavior problem which is 100% bullshit and dangerous, it’s a 97% white district, my son is a minority and LGBTQ. I’m losing my emotional stability.
Where do I find an advocate? I’ve literally done nothing else but research and read laws and policy for the last week and we’ve been having problems for months with them not following his IEP and you know all kinds of just simple things like they don’t even have anybody cleaning the classrooms or the bathrooms. This is the suburban “good” school too. The state of education is 💩., Please add plus 1 to homeschool, at least for now and it's been fantastic
My 5 and a half year old is about a 3rd of the way through 1st grade with me, he is an excellent reader and has some adhd traits but not hyperlexic like I was., Same here. Where I am they don’t even bother teaching in SpED classes, they usually have a parent volunteer put on a movie and that’s it for the day., We choose to homeschool as well, but choice is used loosely here—it was really our only viable option after attempts to make public school work., That’s right, get a special needs education lawyer asap if you’re in the US they can argue your district isn’t doing enough and get you what you need ie an autism school (paid by your public school tuition is usually well over 100k a year)., Except, in the US at least, they are legally required to and they are given specific federal and state funds that are earmarked for only special education. They are called public schools for a reason. Our tax dollars pay for them so why should our kids not benefit just because they were born different? And you are way off saying every city/state in the U.S has an available special needs school and even if they did they would more than likely be private and why should we pay expensive tuition for our kids and still pay taxes for public schools where are they "aren't allowed or can't be included?" I do not think it is an unrealistic expectation that my tax dollars provide me with state funded usable things like roads, libraries, police, and schools Otherwise why are we paying taxes?, I agree the road ahead is likely to be difficult for the OP. 😞 But I just wanted to make sure they knew their rights and that there are advocates who can help support their child to hopefully gwt them the education they are entitled to. If a school is telling them that public schools aren’t for kids with special needs, that school is counting on them not understanding their rights., Are you on Facebook or Instagram? Maybe looking for Advocate + Your City/State and see if anything pops up. Also join FB groups for Support. There's a few advocates that advertise inside them., The website you're talking about is for the local BOCES or for the school district itself?, At the very least, they can qualify what they mean when they say
> "public school systems aren't made for special needs kids and so with the high amount of special kids we don't have resources and support to really accomodate"
to a judge. They can detail the reasons why they have come to this conclusion, what options they have tried, which specialists they have consulted etc.
Even "poor" school districts have resources available to them at the state and federal level to help with costs associated with outsized special needs programs - including a collaborative special needs school that serves multiple school districts to better share resources.
But as it stands, it reeks of laziness ignorance and those are the nicest ways to express my feelings on this., Really? Okay.
I’m still signed up and check every couple weeks or so for like ten minutes- but haven’t truly participated in social media for a few years now. I also would prefer confidentiality but if they’re just in the group I can reach out to them. Thanks for this advice :), Many autism advocates work independently now. I found mine through Nextdoor, but I'm sure if you keep digging you online might find one in your area,who can attend the meeting with you. My son is 13 and I've had to call in an advocate 3 times. He aged out of the local advocate organization so I had to find one on my own too. By law your son is protected and legally has right to all services/accommodations he needs in school. , >Many autism advocates work independently now.
This is so true. You could even look into whatever FB 'Special Needs Parents of -Your City-' and search for Advocates.
|
Is there an evaluation to determine capacity for self sufficiency?
|
My daughter was diagnosed with asd in 4th grade and again in 6th grade. Her father has always and only been problematic by first denying the diagnosis, not accepting it, claiming I made it up, shaming her for it ect.
We separated right before her first ADOS and finalized the divorce right after the second.
Bc she attends public school getting her appropriate support was always difficult but it became like a job for me that I got good at. I did all iep meetings and school stuff to make sure she was LEARNING (not just being given grades to pass her).
Bc the school denied her learning issues and gave awful opinions on the psycho-edu evals of 2nd n 3rd grade they awarded her a very large sum in the form of a recompensatory educational funds which we never touched. I wanted to wait till she was older- now-ish - to see where she really needed it. Bc of all the covid stuff, the district got pretty loose goosey with the rules on what that fund could be used for. Last year I asked if it could be used to pay for some type of post high school training or edu that is affiliated w the district while she's remains enrolled as she's entitled to until the age of 21 per iep laws... but only if she needed it / couldnt pass the new state requirements (and not the loophole one). They agreed.
At this years iep meeting, her final, I planned on having all those specifics put in (last year it was very generalized, I WANT my daughter to graduate at 12th grade but only if she can support herself in some measurable realistic way). Unfortunately I tested positive for covid so I had to attend virtually. And her dad showed up to this meeting. And the connection was crap and I missed most of what was said in the meeting. I figured I'd review the draft iep, which had always been sent to me via email 2 or 3 days later, and schedule another meeting if necessary. But her sel printed the copy of the draft the next day and her dad picked it up and signed the norepp right there.
On the 3rd day I sent an email asking for the draft and was told not to worry, the norepp was signed. There's much more drama to this but the end of this part of the story goes like this: dad had it put in the iep that our daughter graduates this year no matter what, she will not be utilizing any of the education available they 21 years of age. He canceled her one to one which she has had ever day of ever year, lowered or eliminated goals...it was awful. But legal bc he signed it. I am disputing it via emergency petition and requested a hearing but they have 30 days to approve the request and 60 days to schedule the hearing. They're simply not enough time to fix this.
Full disclosure: I want my daughter to live an independent life... but I want to know that she can before pushing her out the door OR cutting off all her support. I found out later dad is worried if she's in school til 21 he'll have to pay child support til she's 21. I don't even know if that's true.... but I might find out soon.
Does anyone know if there's an evaluation that can determine if my adult soon to be high school graduate daughter can support herself? I've been preparing to be somewhat responsible for her as an adult since I realized dad only wants to not be responsible for her. I almost have enough money saved up to BUY her an apartment right next to my house. I'm sure she can earn enough at any job to cover the bills and as long as I'm right there I'm sure she'll be OK living somewhat independently ... but that's not really supporting herself is it??
I do not want dad's help at all, but I might need it for a little while longer. Prior to him ruining ask the work I put in towards her future & her ieps I wouldn't have thought twice once child support ended, I would've done what I've always done: figured it out. But if he is obligated to continue to be responsible for her, after that stunt he pulled, Im not letting him of the hook.
But how do I KNOW if she can support herself or not? Does anyone know of an evaluation that can test her functionality, ability to work & sustain a job that also takes into account the cost of living in our area and her cognitive skills... ect ect ect?
Maybe I'll get a report back that says I'm a drama queen helicopter mom who is making a big deal out of nothing...I HOPE that's what it says. But if it finds what I see every day as well as her teachers and suppirt team see every year... that she cannot sustain focus long enough to do even menial tasks without constant supervision and frequent reminders, that's there's not a lot of jobs that she could hold onto w that issue and certainly none that pay an estimated $1800 a month to meet the bare bone minimum requirements to live here and support oneself.
I am hoping to learn of some kind of evaluation that determines these things so I can know if I should let the door close on dads responsibility to her when she graduates or if I should take him to court to continue sharing the responsibility until I have enough saved that we won't need anything from him ever again....
Anyone know of an eval like that???
I'm in PA/NJ/DE areas btw....
|
I’ll be honest, I’m having a hard time reading your post because the length and formatting. But I want to help. I’m an OT and worked in schools for many years. Can you clarify, in really simple terms, what information you are asking for?, Have you applied for disability with the state? There are programs to find work with a coach in Conn (BRS). Theyd have an eval I expect., Have you applied for disability with the state? There are programs to find work with a coach in Conn (BRS). Theyd have an eval I expect., Lol... sorry, that's my worst habit- talking too much. My divorce lawyer used to answer her phone when she saw it was me by saying something very similar! Only she opened w reminding me of her hourly rate!
Is there some kind of evaluation that can determine if my kid is able to support herself as an adult after graduation that encompasses all the factors that are relevant?
Incidentally, the reason it took me so long to respond is bc my original response was even longer that my original question! I am hopeless!!!
Thanks for reading and wanting to help!!, No worries :)
Here is a link for a research article that does this exact thing using case studies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2835824/
In it, they list the KELS as a good standardized assessment that can be used to determine if someone has the skills needed to live safely on their own. Here’s a blurb:
“Assessments such as KELS can be performed in a clinic or home setting to directly observe how individuals perform activities related to financial management, medical self-care, and tasks related to independent living.”
I’ve used it a handful of times. It’s a great tool, however it’s definitely dated, I believe it includes balancing a checkbook and estimating costs of groceries (prices were from 30 ish years ago). And most schools don’t have the assessment tool.
But here’s the thing. If your child needs a 1:1, and as you say, doesn’t have the attention to do even menial tasks, I think you probably already know the answer to that question. To me, it sounds more like you’re grappling with the very real problem parents of disabled children face after high school which is…what’s next? What happens when there isn’t a structured, safe place for them to go every day where they are fed and cared for and aided in their development. And you’re doing this with a co-parent that seems to have a very different view of the situation than you do. And you’re understandably scared.
Get in touch with other families that have gone through this. Get in touch with the county board of DD, and any work training organizations near you. Your school may have resources to these places they can share. And if you’re not already, consider getting a therapist for yourself. It’s going to be tough and scary and new, but you will get through it. Good luck, I’ll be honest, I’m having a hard time reading your post because the length and formatting. But I want to help. I’m an OT and worked in schools for many years. Can you clarify, in really simple terms, what information you are asking for?, Have you applied for disability with the state? There are programs to find work with a coach in Conn (BRS). Theyd have an eval I expect., Have you applied for disability with the state? There are programs to find work with a coach in Conn (BRS). Theyd have an eval I expect., Lol... sorry, that's my worst habit- talking too much. My divorce lawyer used to answer her phone when she saw it was me by saying something very similar! Only she opened w reminding me of her hourly rate!
Is there some kind of evaluation that can determine if my kid is able to support herself as an adult after graduation that encompasses all the factors that are relevant?
Incidentally, the reason it took me so long to respond is bc my original response was even longer that my original question! I am hopeless!!!
Thanks for reading and wanting to help!!, No worries :)
Here is a link for a research article that does this exact thing using case studies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2835824/
In it, they list the KELS as a good standardized assessment that can be used to determine if someone has the skills needed to live safely on their own. Here’s a blurb:
“Assessments such as KELS can be performed in a clinic or home setting to directly observe how individuals perform activities related to financial management, medical self-care, and tasks related to independent living.”
I’ve used it a handful of times. It’s a great tool, however it’s definitely dated, I believe it includes balancing a checkbook and estimating costs of groceries (prices were from 30 ish years ago). And most schools don’t have the assessment tool.
But here’s the thing. If your child needs a 1:1, and as you say, doesn’t have the attention to do even menial tasks, I think you probably already know the answer to that question. To me, it sounds more like you’re grappling with the very real problem parents of disabled children face after high school which is…what’s next? What happens when there isn’t a structured, safe place for them to go every day where they are fed and cared for and aided in their development. And you’re doing this with a co-parent that seems to have a very different view of the situation than you do. And you’re understandably scared.
Get in touch with other families that have gone through this. Get in touch with the county board of DD, and any work training organizations near you. Your school may have resources to these places they can share. And if you’re not already, consider getting a therapist for yourself. It’s going to be tough and scary and new, but you will get through it. Good luck, I’ll be honest, I’m having a hard time reading your post because the length and formatting. But I want to help. I’m an OT and worked in schools for many years. Can you clarify, in really simple terms, what information you are asking for?, Have you applied for disability with the state? There are programs to find work with a coach in Conn (BRS). Theyd have an eval I expect., Have you applied for disability with the state? There are programs to find work with a coach in Conn (BRS). Theyd have an eval I expect., Lol... sorry, that's my worst habit- talking too much. My divorce lawyer used to answer her phone when she saw it was me by saying something very similar! Only she opened w reminding me of her hourly rate!
Is there some kind of evaluation that can determine if my kid is able to support herself as an adult after graduation that encompasses all the factors that are relevant?
Incidentally, the reason it took me so long to respond is bc my original response was even longer that my original question! I am hopeless!!!
Thanks for reading and wanting to help!!, No worries :)
Here is a link for a research article that does this exact thing using case studies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2835824/
In it, they list the KELS as a good standardized assessment that can be used to determine if someone has the skills needed to live safely on their own. Here’s a blurb:
“Assessments such as KELS can be performed in a clinic or home setting to directly observe how individuals perform activities related to financial management, medical self-care, and tasks related to independent living.”
I’ve used it a handful of times. It’s a great tool, however it’s definitely dated, I believe it includes balancing a checkbook and estimating costs of groceries (prices were from 30 ish years ago). And most schools don’t have the assessment tool.
But here’s the thing. If your child needs a 1:1, and as you say, doesn’t have the attention to do even menial tasks, I think you probably already know the answer to that question. To me, it sounds more like you’re grappling with the very real problem parents of disabled children face after high school which is…what’s next? What happens when there isn’t a structured, safe place for them to go every day where they are fed and cared for and aided in their development. And you’re doing this with a co-parent that seems to have a very different view of the situation than you do. And you’re understandably scared.
Get in touch with other families that have gone through this. Get in touch with the county board of DD, and any work training organizations near you. Your school may have resources to these places they can share. And if you’re not already, consider getting a therapist for yourself. It’s going to be tough and scary and new, but you will get through it. Good luck, I’ll be honest, I’m having a hard time reading your post because the length and formatting. But I want to help. I’m an OT and worked in schools for many years. Can you clarify, in really simple terms, what information you are asking for?, Have you applied for disability with the state? There are programs to find work with a coach in Conn (BRS). Theyd have an eval I expect., Have you applied for disability with the state? There are programs to find work with a coach in Conn (BRS). Theyd have an eval I expect., Lol... sorry, that's my worst habit- talking too much. My divorce lawyer used to answer her phone when she saw it was me by saying something very similar! Only she opened w reminding me of her hourly rate!
Is there some kind of evaluation that can determine if my kid is able to support herself as an adult after graduation that encompasses all the factors that are relevant?
Incidentally, the reason it took me so long to respond is bc my original response was even longer that my original question! I am hopeless!!!
Thanks for reading and wanting to help!!, No worries :)
Here is a link for a research article that does this exact thing using case studies:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2835824/
In it, they list the KELS as a good standardized assessment that can be used to determine if someone has the skills needed to live safely on their own. Here’s a blurb:
“Assessments such as KELS can be performed in a clinic or home setting to directly observe how individuals perform activities related to financial management, medical self-care, and tasks related to independent living.”
I’ve used it a handful of times. It’s a great tool, however it’s definitely dated, I believe it includes balancing a checkbook and estimating costs of groceries (prices were from 30 ish years ago). And most schools don’t have the assessment tool.
But here’s the thing. If your child needs a 1:1, and as you say, doesn’t have the attention to do even menial tasks, I think you probably already know the answer to that question. To me, it sounds more like you’re grappling with the very real problem parents of disabled children face after high school which is…what’s next? What happens when there isn’t a structured, safe place for them to go every day where they are fed and cared for and aided in their development. And you’re doing this with a co-parent that seems to have a very different view of the situation than you do. And you’re understandably scared.
Get in touch with other families that have gone through this. Get in touch with the county board of DD, and any work training organizations near you. Your school may have resources to these places they can share. And if you’re not already, consider getting a therapist for yourself. It’s going to be tough and scary and new, but you will get through it. Good luck
|
Is there any way to bring up autism to someone who doesn’t want to get their child diagnosed?
|
I’m a clinical assessor, 99% of the kids I meet with have autism (usually along with some other diagnoses). My nephew is presenting as autistic and it’s starting to affect him in bigger ways. He’s almost 3 and nonverbal, aggressive and struggling socially. He’s a funny, sweet and energetic kid but clearly frustrated that he can’t communicate. I shared something about early intervention on social media (which I do often) and they yelled at me for spreading fear about not meeting milestones and that speech delays don’t mean anything- kids “catch up”. I don’t know what it’s like to be on that side of things. Is there anything I can do to support them? Is it best to just be quiet? I worry that he won’t get support until he starts kindergarten and the school says something, but he could be getting help now. My nephew on my other side had a speech delay, I talked to my sister and she got him diagnosed with apraxia at 2. He got speech and now at 6 has fully graduated from services. I just want the same for my other side of the family.
|
Some parents are just in denial bc they do not want their child to be “labelled” nor looked at as “not normal”. When we tell people we are in the process of getting our son evaluated, they always ask “why? He seems normal. He’ll eventually catch up”. We just say that early intervention is key. We don’t want him to struggle when he starts school and by then it’ll be tough., Parents of autistic kids are snappy because we don't get much sleep or help but we get lots of advice. Words are cheap to us. Our lives are nothing but cheap words and meltdowns. If you occasionally babysat for them you would probably be God-tier., As an SLP all I can say is the phrase "you can lead a horse to water..." fits in regard to DX, TX and just discussing possible developmental delays. The only thing you will accomplish with a family in denial is alienation. It's a shame but we'll pick him up in school unless the pediatrician refers him earlier. Also please keep posting about early intervention, if they blather again, just remind them that this is your social media acccount and you feel you have a professional responsibility to present the research to others. They don't have to agree., Their reaction probably means they have a clue but don’t want to accept it. My husband was like that until the developmental pediatrician broke it to him. That man cried for hours and apologized for not validating my concerns. Unfortunately many people do not want to accept that their child may have a diagnosis and explain it away. It’s unfortunate, especially when early intervention is crucial. I think you are too close to this and they are not going to listen to you. Maybe a teacher once he’s in school?, Are there any interventions you would suggest that are just good parenting for all kids? I think *most* kids would benefit from the interventions that we are doing with our child, whether they "need" them or not. Social Stories are a powerful tool for *all* young children to help with transitions / decrease meltdowns, for example. The regulation techniques we practice in Occupational Therapy -- like checking in with your body to identify how you feel or deep breathing if you don't feel calm / ready to learn -- are good tools for all kids.
We have a diagnosis, and that lets us get things like insurance reimbursement and an IEP (in the US). But most of the time I don't lead with the diagnosis, and instead explain my LO's unique needs. "She struggles with regulation and social pragmatics compared to other kids her age. We are doing lots of things to support her -- like Occupational Therapy (OT) to help her with regulation or Speech Therapy to help with pragmatic language / social scaffolding." Maybe leading with direct needs instead of a big, scary diagnosis would be more palatable for these folks and then they can come to the conclusion themselves that they should pursue a diagnosis?, You can lead a horse to water, but you can’t make it drink., What if you didn't even mention autism and suggested speech therapy? I mean it's undeniable he has a speech delay and autism or not, speech therapy could help with that. To me it's less about the actual diagnosis and more about getting the correct services. My daughter started speech long before she got her diagnosis., We went through this with my nephew. My husband works with ASD kids but honestly even I could tell from a young age that my nephew has autism. Ultimately, we decided that it wasn’t our business (because it isn’t) and we let them follow their own journey. He was eventually diagnosed at 5.
I have my own ND kid (jury is still out on ASD). I honestly don’t want advice or feedback of any kind from family. I just want support and no judgement., Its a tough call. Some people do not appreciate unsolicited advice / criticism. Some do.
You're right though, there will be plenty of professionals in the child's life who will point it out. Doctors, school, daycare. I know all of them said things to me when my son was young! (And they still do as a teenager, never a shortage of outside input lol)., My son is the only diagnosed child in. My family and I think my nephew might also be autistic, when I brought it up to my sister she went around every reason I had and ended it with “ I just don’t care”, My sister loves my kids as if they were her own. She also doesn't see them single every day so she has been able to notice several things about them that I did not. And each time she mentioned them to me, I was initially resistant but then I realized she was right. I am so glad she told me those things even though it was hard to hear at the time. I think if you are doing it from a kind and loving place, hopefully your sister will understand you were just concerned for your nephew. I would also frame it as "I noticed xyz, what do you think of that?" Then I would just leave it., No one was able to tell me before I was ready to listen because in my case my daughter was much like me and how I was as a child and I was not willing to acknowledge that I might be neurodivergent. If someone told me (they kind of tried to) I got defensive because it was more about me than my child unfortunately. There could be a bit of that going on., Maybe start with a gentle positive approach. Try convincing her to get him into speech. Talking makes parenting so much easier. It also helps them socialize better.
See if she would be willing to try a little speech just so she could communicate better with her little boy. Leave out the scary terminology like speech delay, Autism ect…. Lots of kids use a little speech that don’t end up Autistic.
It would at least be a good first step.
Even better if you know a good one that does home visits., Had a friend like this. Her son didn’t meet any milestones on time and was non verbal. He did eventually start talking with speech impediments so hard to understand.
He is in grade one now and last year in kindergarten the teacher asked them to see a doctor for his unusual hand movements. I guess she thought once s doctor saw him if would get the ball rolling because it’s really very obvious. She had a video call with a doctor telling him he met all other milestones and she wasn’t concerned and that was that.
I assume it will take the school continually pressuring her to get him a diagnosis for her to take it further.
I never said anything but I probably would of it was my family., They probably know already, or at least sense their son isn’t presenting typically
My parents were in major denial about my son. Some people just don’t want to know, I'm sure that they already know. I was kind of the same when my son was younger. I knew he probably had autism, I didn't meet any of his milestones, never started crawling, and never started babbling or talking, etc. I knew but I was just in denial. I really wish I wouldn't have been, because I didn't start getting him services until he was five, and I know if we had started earlier things would have been better. I had people tell me that he was probably autistic, and I just ignored them. Hopefully they come around eventually., You diagnose 99% of the kids as autistic?, Long ago, when I worked in early childhood education, I was told many parents need to hear it from 3 different sources before they really take it in. So maybe the preschool teacher says something and they brush it off. Then a family member says something. They brush it off. Then another teacher says something. Ohhhh...maybe I should look into this.
It is hard to accept something might be wrong. No one wants to go down that path. It often takes a lot of clues and signals for parents to accept the possibility. When they start hearing from multiple sources, it is harder to ignore.
Unfortunately, you can't push too hard or you risk alienation. You want to be an ally for when they finally do come around.
Does the child see a pediatrician regularly? I would think the pediatrician would be concerned about the lack of speech., As assessor yourself, remember that parents are going through a process with their child. It's a grief process, with denial, bargaining, anger, etc. That's the way our doctor put it when our son was diagnosed at age 5. He'd been showing signs long before that. They're mourning over the things they thought they'd get to do with their child that they aren't getting to do, and for the child they thought they had. It takes time to accept that it isn't going away and that changes will need to be made to help their son succeed.
If he's nonverbal and showing other major signs it will be caught at the developmental appointments or in preschool. Just be there for now and let them know that. They'll probably come to you eventually and then you can offer all of your recommendations and resources, and you could probably send helpful educational gifts his way for birthdays, Christmas, etc in the meantime.
We have a family member who has been working in special education for decades who knew long before we did with our son. After we finally came to her she told us this but that she knew but recognized it wasn't her place to throw the diagnosis at us. Before we knew, that's what she did. Shegot him the best gifts! Sensory things, things to help prepare for preschool and kinder, and the like.
Good luck with everything., When they grow up, the journey toward diagnosis will belong to them. Before, it belong to their parents so advocacy and education to break the stereotypes is key but other than this, you can't do anything more,
if you drop hints about how some local public preschools offers free assessment and even free enrollment for special kids like him, they might consider it. People love free stuff., Honestly? My son's speech therapist from EI straight up said that he had signs of autism and we should get an evaluation. His private SLP referred him after a language evaluation where he refused to cooperate. He was in EI and also private speech because he is Deaf, and I had put down his language delays to later exposure to English/ASL and bilingualism and COVID isolation. (Truthfully, EI had said all of that could be the case too, since he was only about 3 when we got him evaluated and diagnosed. He had been connected with both EI and speech since he was a tiny baby.)
So, I guess my advice would be to try and connect them with a speech therapist first. Therapy can be presented very unthreateningly, as just a little nudge to get the kid back on track and help them catch up. It will mean the kid gets help in an important area right now, and odds are the SLP will push for further evaluation. It's also easier to sell a language delay because that implies a temporary, simple issue.
I am not saying to lie to them. You've identified communication as the major issue where he is struggling and a cause of frustration. So, I would focus on that as the place where you try to support them in getting interventions., Don’t give up tho, the well being of this child is more important than the parents feeling comfortable or not with the subject!, I wouldn’t classify it as autism, you can just say, not that he needs it since a lot of kids catch up with talking on their own but my friends kid went to a speech therapist and it’s doing wonders for their kid and it’s looking like they will be caught up for kindergarten., Yeah that’s a good point, my brother in law’s culture doesn’t really believe in autism which is an added barrier. It’s easy for me to say as the parent of a neurotypical kid but getting the label doesn’t change anything about your kid, it just gives you access to support. That’s great you’re on top of it early!, So showing up over recommendations, got it lol. I was trying to show up by using my connections to set them up with some great therapists, but maybe they just need to know I’ll be there when they’re ready and to keep helping in the usual family ways., That's overly simplistic. OP's family is clearly in denial to not have autism on their radar with a nonverbal 3 year old., I haven’t said anything directly yet. So far I’ve just been sharing my regular posts about speech delays, milestones etc. and they always have some kind of reaction. When he’s aggressed towards my kids (biting, pulling hair, etc) I model what I’d do with a client (calming, redirection) but always say “it’s okay he’s still learning”. When he stims I’ve said “I love his happy hands, he’s such a joyful kid to be around” but that’s really it. Trying to point it out but not in a negative way. Honestly he is a very happy kid to be around lol, I think my sister does know deep down, but her husband is so adamantly against it that they’re in denial., I think our culture plays a role. For us Asians, I feel like there’s this stigma about your kid having autism or adhd. My mil asked “why how did that happen? He seems fine last time we saw him”. She’s acting as if he just woke up & became autistic. My husband is also in the process of being diagnosed bc he used to/does some of our son’s traits and when he asks his mom how he was as a kid, she kept saying “you were fine. You’re normal” but clearly he wasn’t bc he struggled in school and socially. Even after he explained it to his mom, she was saying “you were fine”. Again, denial., Unfortunately, that's not entirely true. Parents with kids that have the label have to have constant vigilance about their child being pigeonholed due to said label. In our house autism is not a bad word (had to explain that to our iep team) but we still have to make sure the people around our kid don't think so either..., Definitely. I think if you were there to just be there and you babysat and gave them date nights and respite, your words would carry a lot more weight. They are bleeding out and they need a tourniquet right now, not a referral to a good vascular surgeon., my response in this thread elaborated further. Being in denial doesn't mean they don't experience the same things we all experience. They probably aren't thinking straight because they aren't getting any quality sleep or respite. If OP could take some of the load off, they might be more open to suggestions rather than just hating everyone for talking and not helping., Sounds like recipe for a disaster. I can’t imagine the pressure on your sister to keep it all to herself assuming she wouldn’t want to upset her husband and press the challenges, Absolutely, this happens across the board. I went to a doctor who said my son’s issues were a tic because he’s autistic. Didn’t even listen to me. As it turns out, no, it wasn’t a tic. It was because he had a medical condition but as soon as he heard autism, he didn’t even bother investigating., You're also just making assumptions, you don't have any idea if they're getting sleep or not.
I just don't think you can make very many legitimate excuses for letting your pride and stubbornness get in the way of the well-being of your child., Think of it as an explanation rather than an excuse. You can make more progress with someone if you understand why they're doing what they're doing.
Whether they're *right* to be that way is a separate issue., I assume most people aren't getting enough help or sleep, Right-? Like, this is base level account in today's world. Add -or subtract- from that for a toddler. Plus non-verbal. Plus acting out/melting down.... Why TF would assume that they're doing so much better than average?, Some parents are just in denial bc they do not want their child to be “labelled” nor looked at as “not normal”. When we tell people we are in the process of getting our son evaluated, they always ask “why? He seems normal. He’ll eventually catch up”. We just say that early intervention is key. We don’t want him to struggle when he starts school and by then it’ll be tough., Parents of autistic kids are snappy because we don't get much sleep or help but we get lots of advice. Words are cheap to us. Our lives are nothing but cheap words and meltdowns. If you occasionally babysat for them you would probably be God-tier., As an SLP all I can say is the phrase "you can lead a horse to water..." fits in regard to DX, TX and just discussing possible developmental delays. The only thing you will accomplish with a family in denial is alienation. It's a shame but we'll pick him up in school unless the pediatrician refers him earlier. Also please keep posting about early intervention, if they blather again, just remind them that this is your social media acccount and you feel you have a professional responsibility to present the research to others. They don't have to agree., Their reaction probably means they have a clue but don’t want to accept it. My husband was like that until the developmental pediatrician broke it to him. That man cried for hours and apologized for not validating my concerns. Unfortunately many people do not want to accept that their child may have a diagnosis and explain it away. It’s unfortunate, especially when early intervention is crucial. I think you are too close to this and they are not going to listen to you. Maybe a teacher once he’s in school?, Are there any interventions you would suggest that are just good parenting for all kids? I think *most* kids would benefit from the interventions that we are doing with our child, whether they "need" them or not. Social Stories are a powerful tool for *all* young children to help with transitions / decrease meltdowns, for example. The regulation techniques we practice in Occupational Therapy -- like checking in with your body to identify how you feel or deep breathing if you don't feel calm / ready to learn -- are good tools for all kids.
We have a diagnosis, and that lets us get things like insurance reimbursement and an IEP (in the US). But most of the time I don't lead with the diagnosis, and instead explain my LO's unique needs. "She struggles with regulation and social pragmatics compared to other kids her age. We are doing lots of things to support her -- like Occupational Therapy (OT) to help her with regulation or Speech Therapy to help with pragmatic language / social scaffolding." Maybe leading with direct needs instead of a big, scary diagnosis would be more palatable for these folks and then they can come to the conclusion themselves that they should pursue a diagnosis?, You can lead a horse to water, but you can’t make it drink., What if you didn't even mention autism and suggested speech therapy? I mean it's undeniable he has a speech delay and autism or not, speech therapy could help with that. To me it's less about the actual diagnosis and more about getting the correct services. My daughter started speech long before she got her diagnosis., We went through this with my nephew. My husband works with ASD kids but honestly even I could tell from a young age that my nephew has autism. Ultimately, we decided that it wasn’t our business (because it isn’t) and we let them follow their own journey. He was eventually diagnosed at 5.
I have my own ND kid (jury is still out on ASD). I honestly don’t want advice or feedback of any kind from family. I just want support and no judgement., Its a tough call. Some people do not appreciate unsolicited advice / criticism. Some do.
You're right though, there will be plenty of professionals in the child's life who will point it out. Doctors, school, daycare. I know all of them said things to me when my son was young! (And they still do as a teenager, never a shortage of outside input lol)., My son is the only diagnosed child in. My family and I think my nephew might also be autistic, when I brought it up to my sister she went around every reason I had and ended it with “ I just don’t care”, My sister loves my kids as if they were her own. She also doesn't see them single every day so she has been able to notice several things about them that I did not. And each time she mentioned them to me, I was initially resistant but then I realized she was right. I am so glad she told me those things even though it was hard to hear at the time. I think if you are doing it from a kind and loving place, hopefully your sister will understand you were just concerned for your nephew. I would also frame it as "I noticed xyz, what do you think of that?" Then I would just leave it., No one was able to tell me before I was ready to listen because in my case my daughter was much like me and how I was as a child and I was not willing to acknowledge that I might be neurodivergent. If someone told me (they kind of tried to) I got defensive because it was more about me than my child unfortunately. There could be a bit of that going on., Maybe start with a gentle positive approach. Try convincing her to get him into speech. Talking makes parenting so much easier. It also helps them socialize better.
See if she would be willing to try a little speech just so she could communicate better with her little boy. Leave out the scary terminology like speech delay, Autism ect…. Lots of kids use a little speech that don’t end up Autistic.
It would at least be a good first step.
Even better if you know a good one that does home visits., Had a friend like this. Her son didn’t meet any milestones on time and was non verbal. He did eventually start talking with speech impediments so hard to understand.
He is in grade one now and last year in kindergarten the teacher asked them to see a doctor for his unusual hand movements. I guess she thought once s doctor saw him if would get the ball rolling because it’s really very obvious. She had a video call with a doctor telling him he met all other milestones and she wasn’t concerned and that was that.
I assume it will take the school continually pressuring her to get him a diagnosis for her to take it further.
I never said anything but I probably would of it was my family., They probably know already, or at least sense their son isn’t presenting typically
My parents were in major denial about my son. Some people just don’t want to know, I'm sure that they already know. I was kind of the same when my son was younger. I knew he probably had autism, I didn't meet any of his milestones, never started crawling, and never started babbling or talking, etc. I knew but I was just in denial. I really wish I wouldn't have been, because I didn't start getting him services until he was five, and I know if we had started earlier things would have been better. I had people tell me that he was probably autistic, and I just ignored them. Hopefully they come around eventually., You diagnose 99% of the kids as autistic?, Long ago, when I worked in early childhood education, I was told many parents need to hear it from 3 different sources before they really take it in. So maybe the preschool teacher says something and they brush it off. Then a family member says something. They brush it off. Then another teacher says something. Ohhhh...maybe I should look into this.
It is hard to accept something might be wrong. No one wants to go down that path. It often takes a lot of clues and signals for parents to accept the possibility. When they start hearing from multiple sources, it is harder to ignore.
Unfortunately, you can't push too hard or you risk alienation. You want to be an ally for when they finally do come around.
Does the child see a pediatrician regularly? I would think the pediatrician would be concerned about the lack of speech., As assessor yourself, remember that parents are going through a process with their child. It's a grief process, with denial, bargaining, anger, etc. That's the way our doctor put it when our son was diagnosed at age 5. He'd been showing signs long before that. They're mourning over the things they thought they'd get to do with their child that they aren't getting to do, and for the child they thought they had. It takes time to accept that it isn't going away and that changes will need to be made to help their son succeed.
If he's nonverbal and showing other major signs it will be caught at the developmental appointments or in preschool. Just be there for now and let them know that. They'll probably come to you eventually and then you can offer all of your recommendations and resources, and you could probably send helpful educational gifts his way for birthdays, Christmas, etc in the meantime.
We have a family member who has been working in special education for decades who knew long before we did with our son. After we finally came to her she told us this but that she knew but recognized it wasn't her place to throw the diagnosis at us. Before we knew, that's what she did. Shegot him the best gifts! Sensory things, things to help prepare for preschool and kinder, and the like.
Good luck with everything., When they grow up, the journey toward diagnosis will belong to them. Before, it belong to their parents so advocacy and education to break the stereotypes is key but other than this, you can't do anything more,
if you drop hints about how some local public preschools offers free assessment and even free enrollment for special kids like him, they might consider it. People love free stuff., Honestly? My son's speech therapist from EI straight up said that he had signs of autism and we should get an evaluation. His private SLP referred him after a language evaluation where he refused to cooperate. He was in EI and also private speech because he is Deaf, and I had put down his language delays to later exposure to English/ASL and bilingualism and COVID isolation. (Truthfully, EI had said all of that could be the case too, since he was only about 3 when we got him evaluated and diagnosed. He had been connected with both EI and speech since he was a tiny baby.)
So, I guess my advice would be to try and connect them with a speech therapist first. Therapy can be presented very unthreateningly, as just a little nudge to get the kid back on track and help them catch up. It will mean the kid gets help in an important area right now, and odds are the SLP will push for further evaluation. It's also easier to sell a language delay because that implies a temporary, simple issue.
I am not saying to lie to them. You've identified communication as the major issue where he is struggling and a cause of frustration. So, I would focus on that as the place where you try to support them in getting interventions., Don’t give up tho, the well being of this child is more important than the parents feeling comfortable or not with the subject!, I wouldn’t classify it as autism, you can just say, not that he needs it since a lot of kids catch up with talking on their own but my friends kid went to a speech therapist and it’s doing wonders for their kid and it’s looking like they will be caught up for kindergarten., Yeah that’s a good point, my brother in law’s culture doesn’t really believe in autism which is an added barrier. It’s easy for me to say as the parent of a neurotypical kid but getting the label doesn’t change anything about your kid, it just gives you access to support. That’s great you’re on top of it early!, So showing up over recommendations, got it lol. I was trying to show up by using my connections to set them up with some great therapists, but maybe they just need to know I’ll be there when they’re ready and to keep helping in the usual family ways., That's overly simplistic. OP's family is clearly in denial to not have autism on their radar with a nonverbal 3 year old., I haven’t said anything directly yet. So far I’ve just been sharing my regular posts about speech delays, milestones etc. and they always have some kind of reaction. When he’s aggressed towards my kids (biting, pulling hair, etc) I model what I’d do with a client (calming, redirection) but always say “it’s okay he’s still learning”. When he stims I’ve said “I love his happy hands, he’s such a joyful kid to be around” but that’s really it. Trying to point it out but not in a negative way. Honestly he is a very happy kid to be around lol, I think my sister does know deep down, but her husband is so adamantly against it that they’re in denial., I think our culture plays a role. For us Asians, I feel like there’s this stigma about your kid having autism or adhd. My mil asked “why how did that happen? He seems fine last time we saw him”. She’s acting as if he just woke up & became autistic. My husband is also in the process of being diagnosed bc he used to/does some of our son’s traits and when he asks his mom how he was as a kid, she kept saying “you were fine. You’re normal” but clearly he wasn’t bc he struggled in school and socially. Even after he explained it to his mom, she was saying “you were fine”. Again, denial., Unfortunately, that's not entirely true. Parents with kids that have the label have to have constant vigilance about their child being pigeonholed due to said label. In our house autism is not a bad word (had to explain that to our iep team) but we still have to make sure the people around our kid don't think so either..., Definitely. I think if you were there to just be there and you babysat and gave them date nights and respite, your words would carry a lot more weight. They are bleeding out and they need a tourniquet right now, not a referral to a good vascular surgeon., my response in this thread elaborated further. Being in denial doesn't mean they don't experience the same things we all experience. They probably aren't thinking straight because they aren't getting any quality sleep or respite. If OP could take some of the load off, they might be more open to suggestions rather than just hating everyone for talking and not helping., Sounds like recipe for a disaster. I can’t imagine the pressure on your sister to keep it all to herself assuming she wouldn’t want to upset her husband and press the challenges, Absolutely, this happens across the board. I went to a doctor who said my son’s issues were a tic because he’s autistic. Didn’t even listen to me. As it turns out, no, it wasn’t a tic. It was because he had a medical condition but as soon as he heard autism, he didn’t even bother investigating., You're also just making assumptions, you don't have any idea if they're getting sleep or not.
I just don't think you can make very many legitimate excuses for letting your pride and stubbornness get in the way of the well-being of your child., Think of it as an explanation rather than an excuse. You can make more progress with someone if you understand why they're doing what they're doing.
Whether they're *right* to be that way is a separate issue., I assume most people aren't getting enough help or sleep, Right-? Like, this is base level account in today's world. Add -or subtract- from that for a toddler. Plus non-verbal. Plus acting out/melting down.... Why TF would assume that they're doing so much better than average?, Some parents are just in denial bc they do not want their child to be “labelled” nor looked at as “not normal”. When we tell people we are in the process of getting our son evaluated, they always ask “why? He seems normal. He’ll eventually catch up”. We just say that early intervention is key. We don’t want him to struggle when he starts school and by then it’ll be tough., Parents of autistic kids are snappy because we don't get much sleep or help but we get lots of advice. Words are cheap to us. Our lives are nothing but cheap words and meltdowns. If you occasionally babysat for them you would probably be God-tier., As an SLP all I can say is the phrase "you can lead a horse to water..." fits in regard to DX, TX and just discussing possible developmental delays. The only thing you will accomplish with a family in denial is alienation. It's a shame but we'll pick him up in school unless the pediatrician refers him earlier. Also please keep posting about early intervention, if they blather again, just remind them that this is your social media acccount and you feel you have a professional responsibility to present the research to others. They don't have to agree., Their reaction probably means they have a clue but don’t want to accept it. My husband was like that until the developmental pediatrician broke it to him. That man cried for hours and apologized for not validating my concerns. Unfortunately many people do not want to accept that their child may have a diagnosis and explain it away. It’s unfortunate, especially when early intervention is crucial. I think you are too close to this and they are not going to listen to you. Maybe a teacher once he’s in school?, Are there any interventions you would suggest that are just good parenting for all kids? I think *most* kids would benefit from the interventions that we are doing with our child, whether they "need" them or not. Social Stories are a powerful tool for *all* young children to help with transitions / decrease meltdowns, for example. The regulation techniques we practice in Occupational Therapy -- like checking in with your body to identify how you feel or deep breathing if you don't feel calm / ready to learn -- are good tools for all kids.
We have a diagnosis, and that lets us get things like insurance reimbursement and an IEP (in the US). But most of the time I don't lead with the diagnosis, and instead explain my LO's unique needs. "She struggles with regulation and social pragmatics compared to other kids her age. We are doing lots of things to support her -- like Occupational Therapy (OT) to help her with regulation or Speech Therapy to help with pragmatic language / social scaffolding." Maybe leading with direct needs instead of a big, scary diagnosis would be more palatable for these folks and then they can come to the conclusion themselves that they should pursue a diagnosis?, You can lead a horse to water, but you can’t make it drink., What if you didn't even mention autism and suggested speech therapy? I mean it's undeniable he has a speech delay and autism or not, speech therapy could help with that. To me it's less about the actual diagnosis and more about getting the correct services. My daughter started speech long before she got her diagnosis., We went through this with my nephew. My husband works with ASD kids but honestly even I could tell from a young age that my nephew has autism. Ultimately, we decided that it wasn’t our business (because it isn’t) and we let them follow their own journey. He was eventually diagnosed at 5.
I have my own ND kid (jury is still out on ASD). I honestly don’t want advice or feedback of any kind from family. I just want support and no judgement., Its a tough call. Some people do not appreciate unsolicited advice / criticism. Some do.
You're right though, there will be plenty of professionals in the child's life who will point it out. Doctors, school, daycare. I know all of them said things to me when my son was young! (And they still do as a teenager, never a shortage of outside input lol)., My son is the only diagnosed child in. My family and I think my nephew might also be autistic, when I brought it up to my sister she went around every reason I had and ended it with “ I just don’t care”, My sister loves my kids as if they were her own. She also doesn't see them single every day so she has been able to notice several things about them that I did not. And each time she mentioned them to me, I was initially resistant but then I realized she was right. I am so glad she told me those things even though it was hard to hear at the time. I think if you are doing it from a kind and loving place, hopefully your sister will understand you were just concerned for your nephew. I would also frame it as "I noticed xyz, what do you think of that?" Then I would just leave it., No one was able to tell me before I was ready to listen because in my case my daughter was much like me and how I was as a child and I was not willing to acknowledge that I might be neurodivergent. If someone told me (they kind of tried to) I got defensive because it was more about me than my child unfortunately. There could be a bit of that going on., Maybe start with a gentle positive approach. Try convincing her to get him into speech. Talking makes parenting so much easier. It also helps them socialize better.
See if she would be willing to try a little speech just so she could communicate better with her little boy. Leave out the scary terminology like speech delay, Autism ect…. Lots of kids use a little speech that don’t end up Autistic.
It would at least be a good first step.
Even better if you know a good one that does home visits., Had a friend like this. Her son didn’t meet any milestones on time and was non verbal. He did eventually start talking with speech impediments so hard to understand.
He is in grade one now and last year in kindergarten the teacher asked them to see a doctor for his unusual hand movements. I guess she thought once s doctor saw him if would get the ball rolling because it’s really very obvious. She had a video call with a doctor telling him he met all other milestones and she wasn’t concerned and that was that.
I assume it will take the school continually pressuring her to get him a diagnosis for her to take it further.
I never said anything but I probably would of it was my family., They probably know already, or at least sense their son isn’t presenting typically
My parents were in major denial about my son. Some people just don’t want to know, I'm sure that they already know. I was kind of the same when my son was younger. I knew he probably had autism, I didn't meet any of his milestones, never started crawling, and never started babbling or talking, etc. I knew but I was just in denial. I really wish I wouldn't have been, because I didn't start getting him services until he was five, and I know if we had started earlier things would have been better. I had people tell me that he was probably autistic, and I just ignored them. Hopefully they come around eventually., You diagnose 99% of the kids as autistic?, Long ago, when I worked in early childhood education, I was told many parents need to hear it from 3 different sources before they really take it in. So maybe the preschool teacher says something and they brush it off. Then a family member says something. They brush it off. Then another teacher says something. Ohhhh...maybe I should look into this.
It is hard to accept something might be wrong. No one wants to go down that path. It often takes a lot of clues and signals for parents to accept the possibility. When they start hearing from multiple sources, it is harder to ignore.
Unfortunately, you can't push too hard or you risk alienation. You want to be an ally for when they finally do come around.
Does the child see a pediatrician regularly? I would think the pediatrician would be concerned about the lack of speech., As assessor yourself, remember that parents are going through a process with their child. It's a grief process, with denial, bargaining, anger, etc. That's the way our doctor put it when our son was diagnosed at age 5. He'd been showing signs long before that. They're mourning over the things they thought they'd get to do with their child that they aren't getting to do, and for the child they thought they had. It takes time to accept that it isn't going away and that changes will need to be made to help their son succeed.
If he's nonverbal and showing other major signs it will be caught at the developmental appointments or in preschool. Just be there for now and let them know that. They'll probably come to you eventually and then you can offer all of your recommendations and resources, and you could probably send helpful educational gifts his way for birthdays, Christmas, etc in the meantime.
We have a family member who has been working in special education for decades who knew long before we did with our son. After we finally came to her she told us this but that she knew but recognized it wasn't her place to throw the diagnosis at us. Before we knew, that's what she did. Shegot him the best gifts! Sensory things, things to help prepare for preschool and kinder, and the like.
Good luck with everything., When they grow up, the journey toward diagnosis will belong to them. Before, it belong to their parents so advocacy and education to break the stereotypes is key but other than this, you can't do anything more,
if you drop hints about how some local public preschools offers free assessment and even free enrollment for special kids like him, they might consider it. People love free stuff., Honestly? My son's speech therapist from EI straight up said that he had signs of autism and we should get an evaluation. His private SLP referred him after a language evaluation where he refused to cooperate. He was in EI and also private speech because he is Deaf, and I had put down his language delays to later exposure to English/ASL and bilingualism and COVID isolation. (Truthfully, EI had said all of that could be the case too, since he was only about 3 when we got him evaluated and diagnosed. He had been connected with both EI and speech since he was a tiny baby.)
So, I guess my advice would be to try and connect them with a speech therapist first. Therapy can be presented very unthreateningly, as just a little nudge to get the kid back on track and help them catch up. It will mean the kid gets help in an important area right now, and odds are the SLP will push for further evaluation. It's also easier to sell a language delay because that implies a temporary, simple issue.
I am not saying to lie to them. You've identified communication as the major issue where he is struggling and a cause of frustration. So, I would focus on that as the place where you try to support them in getting interventions., Don’t give up tho, the well being of this child is more important than the parents feeling comfortable or not with the subject!, I wouldn’t classify it as autism, you can just say, not that he needs it since a lot of kids catch up with talking on their own but my friends kid went to a speech therapist and it’s doing wonders for their kid and it’s looking like they will be caught up for kindergarten., Yeah that’s a good point, my brother in law’s culture doesn’t really believe in autism which is an added barrier. It’s easy for me to say as the parent of a neurotypical kid but getting the label doesn’t change anything about your kid, it just gives you access to support. That’s great you’re on top of it early!, So showing up over recommendations, got it lol. I was trying to show up by using my connections to set them up with some great therapists, but maybe they just need to know I’ll be there when they’re ready and to keep helping in the usual family ways., That's overly simplistic. OP's family is clearly in denial to not have autism on their radar with a nonverbal 3 year old., I haven’t said anything directly yet. So far I’ve just been sharing my regular posts about speech delays, milestones etc. and they always have some kind of reaction. When he’s aggressed towards my kids (biting, pulling hair, etc) I model what I’d do with a client (calming, redirection) but always say “it’s okay he’s still learning”. When he stims I’ve said “I love his happy hands, he’s such a joyful kid to be around” but that’s really it. Trying to point it out but not in a negative way. Honestly he is a very happy kid to be around lol, I think my sister does know deep down, but her husband is so adamantly against it that they’re in denial., I think our culture plays a role. For us Asians, I feel like there’s this stigma about your kid having autism or adhd. My mil asked “why how did that happen? He seems fine last time we saw him”. She’s acting as if he just woke up & became autistic. My husband is also in the process of being diagnosed bc he used to/does some of our son’s traits and when he asks his mom how he was as a kid, she kept saying “you were fine. You’re normal” but clearly he wasn’t bc he struggled in school and socially. Even after he explained it to his mom, she was saying “you were fine”. Again, denial., Unfortunately, that's not entirely true. Parents with kids that have the label have to have constant vigilance about their child being pigeonholed due to said label. In our house autism is not a bad word (had to explain that to our iep team) but we still have to make sure the people around our kid don't think so either..., Definitely. I think if you were there to just be there and you babysat and gave them date nights and respite, your words would carry a lot more weight. They are bleeding out and they need a tourniquet right now, not a referral to a good vascular surgeon., my response in this thread elaborated further. Being in denial doesn't mean they don't experience the same things we all experience. They probably aren't thinking straight because they aren't getting any quality sleep or respite. If OP could take some of the load off, they might be more open to suggestions rather than just hating everyone for talking and not helping., Sounds like recipe for a disaster. I can’t imagine the pressure on your sister to keep it all to herself assuming she wouldn’t want to upset her husband and press the challenges, Absolutely, this happens across the board. I went to a doctor who said my son’s issues were a tic because he’s autistic. Didn’t even listen to me. As it turns out, no, it wasn’t a tic. It was because he had a medical condition but as soon as he heard autism, he didn’t even bother investigating., You're also just making assumptions, you don't have any idea if they're getting sleep or not.
I just don't think you can make very many legitimate excuses for letting your pride and stubbornness get in the way of the well-being of your child., Think of it as an explanation rather than an excuse. You can make more progress with someone if you understand why they're doing what they're doing.
Whether they're *right* to be that way is a separate issue., I assume most people aren't getting enough help or sleep, Right-? Like, this is base level account in today's world. Add -or subtract- from that for a toddler. Plus non-verbal. Plus acting out/melting down.... Why TF would assume that they're doing so much better than average?, Some parents are just in denial bc they do not want their child to be “labelled” nor looked at as “not normal”. When we tell people we are in the process of getting our son evaluated, they always ask “why? He seems normal. He’ll eventually catch up”. We just say that early intervention is key. We don’t want him to struggle when he starts school and by then it’ll be tough., Parents of autistic kids are snappy because we don't get much sleep or help but we get lots of advice. Words are cheap to us. Our lives are nothing but cheap words and meltdowns. If you occasionally babysat for them you would probably be God-tier., As an SLP all I can say is the phrase "you can lead a horse to water..." fits in regard to DX, TX and just discussing possible developmental delays. The only thing you will accomplish with a family in denial is alienation. It's a shame but we'll pick him up in school unless the pediatrician refers him earlier. Also please keep posting about early intervention, if they blather again, just remind them that this is your social media acccount and you feel you have a professional responsibility to present the research to others. They don't have to agree., Their reaction probably means they have a clue but don’t want to accept it. My husband was like that until the developmental pediatrician broke it to him. That man cried for hours and apologized for not validating my concerns. Unfortunately many people do not want to accept that their child may have a diagnosis and explain it away. It’s unfortunate, especially when early intervention is crucial. I think you are too close to this and they are not going to listen to you. Maybe a teacher once he’s in school?, Are there any interventions you would suggest that are just good parenting for all kids? I think *most* kids would benefit from the interventions that we are doing with our child, whether they "need" them or not. Social Stories are a powerful tool for *all* young children to help with transitions / decrease meltdowns, for example. The regulation techniques we practice in Occupational Therapy -- like checking in with your body to identify how you feel or deep breathing if you don't feel calm / ready to learn -- are good tools for all kids.
We have a diagnosis, and that lets us get things like insurance reimbursement and an IEP (in the US). But most of the time I don't lead with the diagnosis, and instead explain my LO's unique needs. "She struggles with regulation and social pragmatics compared to other kids her age. We are doing lots of things to support her -- like Occupational Therapy (OT) to help her with regulation or Speech Therapy to help with pragmatic language / social scaffolding." Maybe leading with direct needs instead of a big, scary diagnosis would be more palatable for these folks and then they can come to the conclusion themselves that they should pursue a diagnosis?, You can lead a horse to water, but you can’t make it drink., What if you didn't even mention autism and suggested speech therapy? I mean it's undeniable he has a speech delay and autism or not, speech therapy could help with that. To me it's less about the actual diagnosis and more about getting the correct services. My daughter started speech long before she got her diagnosis., We went through this with my nephew. My husband works with ASD kids but honestly even I could tell from a young age that my nephew has autism. Ultimately, we decided that it wasn’t our business (because it isn’t) and we let them follow their own journey. He was eventually diagnosed at 5.
I have my own ND kid (jury is still out on ASD). I honestly don’t want advice or feedback of any kind from family. I just want support and no judgement., Its a tough call. Some people do not appreciate unsolicited advice / criticism. Some do.
You're right though, there will be plenty of professionals in the child's life who will point it out. Doctors, school, daycare. I know all of them said things to me when my son was young! (And they still do as a teenager, never a shortage of outside input lol)., My son is the only diagnosed child in. My family and I think my nephew might also be autistic, when I brought it up to my sister she went around every reason I had and ended it with “ I just don’t care”, My sister loves my kids as if they were her own. She also doesn't see them single every day so she has been able to notice several things about them that I did not. And each time she mentioned them to me, I was initially resistant but then I realized she was right. I am so glad she told me those things even though it was hard to hear at the time. I think if you are doing it from a kind and loving place, hopefully your sister will understand you were just concerned for your nephew. I would also frame it as "I noticed xyz, what do you think of that?" Then I would just leave it., No one was able to tell me before I was ready to listen because in my case my daughter was much like me and how I was as a child and I was not willing to acknowledge that I might be neurodivergent. If someone told me (they kind of tried to) I got defensive because it was more about me than my child unfortunately. There could be a bit of that going on., Maybe start with a gentle positive approach. Try convincing her to get him into speech. Talking makes parenting so much easier. It also helps them socialize better.
See if she would be willing to try a little speech just so she could communicate better with her little boy. Leave out the scary terminology like speech delay, Autism ect…. Lots of kids use a little speech that don’t end up Autistic.
It would at least be a good first step.
Even better if you know a good one that does home visits., Had a friend like this. Her son didn’t meet any milestones on time and was non verbal. He did eventually start talking with speech impediments so hard to understand.
He is in grade one now and last year in kindergarten the teacher asked them to see a doctor for his unusual hand movements. I guess she thought once s doctor saw him if would get the ball rolling because it’s really very obvious. She had a video call with a doctor telling him he met all other milestones and she wasn’t concerned and that was that.
I assume it will take the school continually pressuring her to get him a diagnosis for her to take it further.
I never said anything but I probably would of it was my family., They probably know already, or at least sense their son isn’t presenting typically
My parents were in major denial about my son. Some people just don’t want to know, I'm sure that they already know. I was kind of the same when my son was younger. I knew he probably had autism, I didn't meet any of his milestones, never started crawling, and never started babbling or talking, etc. I knew but I was just in denial. I really wish I wouldn't have been, because I didn't start getting him services until he was five, and I know if we had started earlier things would have been better. I had people tell me that he was probably autistic, and I just ignored them. Hopefully they come around eventually., You diagnose 99% of the kids as autistic?, Long ago, when I worked in early childhood education, I was told many parents need to hear it from 3 different sources before they really take it in. So maybe the preschool teacher says something and they brush it off. Then a family member says something. They brush it off. Then another teacher says something. Ohhhh...maybe I should look into this.
It is hard to accept something might be wrong. No one wants to go down that path. It often takes a lot of clues and signals for parents to accept the possibility. When they start hearing from multiple sources, it is harder to ignore.
Unfortunately, you can't push too hard or you risk alienation. You want to be an ally for when they finally do come around.
Does the child see a pediatrician regularly? I would think the pediatrician would be concerned about the lack of speech., As assessor yourself, remember that parents are going through a process with their child. It's a grief process, with denial, bargaining, anger, etc. That's the way our doctor put it when our son was diagnosed at age 5. He'd been showing signs long before that. They're mourning over the things they thought they'd get to do with their child that they aren't getting to do, and for the child they thought they had. It takes time to accept that it isn't going away and that changes will need to be made to help their son succeed.
If he's nonverbal and showing other major signs it will be caught at the developmental appointments or in preschool. Just be there for now and let them know that. They'll probably come to you eventually and then you can offer all of your recommendations and resources, and you could probably send helpful educational gifts his way for birthdays, Christmas, etc in the meantime.
We have a family member who has been working in special education for decades who knew long before we did with our son. After we finally came to her she told us this but that she knew but recognized it wasn't her place to throw the diagnosis at us. Before we knew, that's what she did. Shegot him the best gifts! Sensory things, things to help prepare for preschool and kinder, and the like.
Good luck with everything., When they grow up, the journey toward diagnosis will belong to them. Before, it belong to their parents so advocacy and education to break the stereotypes is key but other than this, you can't do anything more,
if you drop hints about how some local public preschools offers free assessment and even free enrollment for special kids like him, they might consider it. People love free stuff., Honestly? My son's speech therapist from EI straight up said that he had signs of autism and we should get an evaluation. His private SLP referred him after a language evaluation where he refused to cooperate. He was in EI and also private speech because he is Deaf, and I had put down his language delays to later exposure to English/ASL and bilingualism and COVID isolation. (Truthfully, EI had said all of that could be the case too, since he was only about 3 when we got him evaluated and diagnosed. He had been connected with both EI and speech since he was a tiny baby.)
So, I guess my advice would be to try and connect them with a speech therapist first. Therapy can be presented very unthreateningly, as just a little nudge to get the kid back on track and help them catch up. It will mean the kid gets help in an important area right now, and odds are the SLP will push for further evaluation. It's also easier to sell a language delay because that implies a temporary, simple issue.
I am not saying to lie to them. You've identified communication as the major issue where he is struggling and a cause of frustration. So, I would focus on that as the place where you try to support them in getting interventions., Don’t give up tho, the well being of this child is more important than the parents feeling comfortable or not with the subject!, I wouldn’t classify it as autism, you can just say, not that he needs it since a lot of kids catch up with talking on their own but my friends kid went to a speech therapist and it’s doing wonders for their kid and it’s looking like they will be caught up for kindergarten., Yeah that’s a good point, my brother in law’s culture doesn’t really believe in autism which is an added barrier. It’s easy for me to say as the parent of a neurotypical kid but getting the label doesn’t change anything about your kid, it just gives you access to support. That’s great you’re on top of it early!, So showing up over recommendations, got it lol. I was trying to show up by using my connections to set them up with some great therapists, but maybe they just need to know I’ll be there when they’re ready and to keep helping in the usual family ways., That's overly simplistic. OP's family is clearly in denial to not have autism on their radar with a nonverbal 3 year old., I haven’t said anything directly yet. So far I’ve just been sharing my regular posts about speech delays, milestones etc. and they always have some kind of reaction. When he’s aggressed towards my kids (biting, pulling hair, etc) I model what I’d do with a client (calming, redirection) but always say “it’s okay he’s still learning”. When he stims I’ve said “I love his happy hands, he’s such a joyful kid to be around” but that’s really it. Trying to point it out but not in a negative way. Honestly he is a very happy kid to be around lol, I think my sister does know deep down, but her husband is so adamantly against it that they’re in denial., I think our culture plays a role. For us Asians, I feel like there’s this stigma about your kid having autism or adhd. My mil asked “why how did that happen? He seems fine last time we saw him”. She’s acting as if he just woke up & became autistic. My husband is also in the process of being diagnosed bc he used to/does some of our son’s traits and when he asks his mom how he was as a kid, she kept saying “you were fine. You’re normal” but clearly he wasn’t bc he struggled in school and socially. Even after he explained it to his mom, she was saying “you were fine”. Again, denial., Unfortunately, that's not entirely true. Parents with kids that have the label have to have constant vigilance about their child being pigeonholed due to said label. In our house autism is not a bad word (had to explain that to our iep team) but we still have to make sure the people around our kid don't think so either..., Definitely. I think if you were there to just be there and you babysat and gave them date nights and respite, your words would carry a lot more weight. They are bleeding out and they need a tourniquet right now, not a referral to a good vascular surgeon., my response in this thread elaborated further. Being in denial doesn't mean they don't experience the same things we all experience. They probably aren't thinking straight because they aren't getting any quality sleep or respite. If OP could take some of the load off, they might be more open to suggestions rather than just hating everyone for talking and not helping., Sounds like recipe for a disaster. I can’t imagine the pressure on your sister to keep it all to herself assuming she wouldn’t want to upset her husband and press the challenges, Absolutely, this happens across the board. I went to a doctor who said my son’s issues were a tic because he’s autistic. Didn’t even listen to me. As it turns out, no, it wasn’t a tic. It was because he had a medical condition but as soon as he heard autism, he didn’t even bother investigating., You're also just making assumptions, you don't have any idea if they're getting sleep or not.
I just don't think you can make very many legitimate excuses for letting your pride and stubbornness get in the way of the well-being of your child., Think of it as an explanation rather than an excuse. You can make more progress with someone if you understand why they're doing what they're doing.
Whether they're *right* to be that way is a separate issue., I assume most people aren't getting enough help or sleep, Right-? Like, this is base level account in today's world. Add -or subtract- from that for a toddler. Plus non-verbal. Plus acting out/melting down.... Why TF would assume that they're doing so much better than average?
|
Is there really such thing as Hyperlexia Type III?
|
Curious what people’s thoughts are on type III hyperlexia, which is apparently where someone is hyperlexic, and their autism-like signs disappear over time. Does anyone here actually know of anyone that has had hyperlexia type III with disappearing autism signs? Or is it just something that some parents try to hold onto in hopes of their child not actually having ASD?
|
Has never heard about it. I was "hyperlexic" in childhood, read since I was 2, read music sheets (vocal parts) a capella when I was 6, knew primary school math well when in kindergarten etc.
Still autistic! I am just incredible at masking., I typed out a long reply but then deleted it. I’ll sum it up like this instead. Your child is who they are. They will not grow out of it. They AND you will learn to live with it. If you spend precious energy hoping for some kind of miracle then you’ll just end up disappointed., I think they may just get really good at masking., For context: ASD level 2 adult with hyperlexia/ADHD. They don't actually diagnose it (or they didn't back then) but they review reports on childhood development - mine was atypical for ASD but absolutely typical for someone with type 3 hyperlexia, so it's mentioned as a co-morbid trait in my dx letter.Nowadays, it's almost impossible to tell I'm ASD unless someone knows me very well. I can function very well about 80-90% of the time. I might therefore fit into your criteria of appearing to grow out of my autistic symptoms.The other 10-20% of the time, I'm an absolute mess and completely unable to leave my house and deal with real people. The autism is still there and I know it's never going to go away.
But, in the event you're asking on behalf of a child, I'd like you to know this - it's not the autism that makes me unhappy. It's the self-loathing that comes from being deemed gifted at an early age but being unable to achieve what's expected. Of having parents that dismissed and ignored the autistic symptoms to focus on the early achievements, who would then tell me that I wasn't applying myself or that I was wasting my potential. Of having my autistic traits joked about and dismissed by people I trusted. I am deeply ashamed of my autistic traits, I despise my executive dysfunction, I worry that I might look too goofy and enthusiastic about things, or I might annoy someone, or that the R word is about to be thrown at me. That's the thing that cripples me emotionally and can spark depression. So I lock myself down and often come across as a little intimidating and cold irl.But please look at it this way - if you've got a hyperlexic child, there's an overwhelming likelihood that they're on the spectrum (I think it's about 85% of hyperlexics have ASD). And that child is likely to be gifted, very self-aware and conscious of other people's opinions. Please don't hang your hopes on the autism going away - and PLEASE don't use that type of language around the child. It's important to be able to vent or ask for help - just not when they're present.
Hyperlexic kids often tend to do well in terms of functioning and having low support needs - they can muddle through where other autistic kids might need support (even if it's not ideal). The best thing you can provide is unconditional love and support, so they know they're loved for themselves and not just for their achievements.
(sorry for the essay, I struggle with being concise!), I don’t know anyone personally with “confirmed” Hyperlexia 3, although there is content by Darold A. Treffert MD online and on YouTube who does. Part of the problem is that the people who are authorities to confirm the condition, don’t because it’s not in the DSM-V. My son is mildly hyperlexic (type 2 or 3 is TBD) so I can let you know how that turns out in about 8-10 years!, Can we also say that hyperlexia and echolalia exist together? My son, who just turned 2 years old, knows all letters, numbers, animals, fruits, vegetables and shapes, but has almost zero functional language - he just makes requests for things using their names. He understands a good number of instructions too, and we were diagnosed with level 2 last month.
He however does a lot of scripting, and sings and repeats shows that he saw on the TV when he is idle. I always wondered if that would mean if these two conditions exist together..., My husband was hyperlexic as a very young child, was very symptomatic as an autistic person growing up, and began to have his symptoms mellow out gradually in the 10 years after college. I wouldn't say he isn't autistic anymore, but his sensory and feeding needs have relaxed, and his socio-emotional functioning is nearly indistinguishable from NT folks, except for to close family. He has a Ph. D. And works a tech job that requires a high level of interpersonal communication and he excels. He has acted and directed local musical theatre productions. He has long term, healthy friendships now, and he had no friends in high school. We didn't meet, marry and have children until our late 30's.
Like I said. He's autistic. He always will be. But I can see why experts would have thought he was cured as an adult. The difference in the severity of the symptoms from childhood to now is striking., I don’t know that autism-like signs mean autism. My younger sister was hyperlexic and had a lot of sensory issues that she pretty much grew out of by the time she was an adult but I don’t think she would ever have met the social criteria for a full diagnosis. Would also add that she has ADHD so is still neurodiverse., I think in general if a child is hyperlexic or “high functioning” they can become good at masking. There probably are specific cases where they can outgrow the autism signs but vast majority still are autistic even if they don’t appear to be., There’s most certainly hyperlixia type III. It however doesn’t present the same as true Autism.
It’s missing the intensity and inability to calm yourself. Mostly just emotional immaturity with a lack of communication.
I would fall into hyperlexia type III category as a very early reader and diagnosed with auditory processing delay. (Painfully shy as a kid and socially awkward but absolutely not ASD.).
My son is ASD 2 he does act like me many times. However his desire to socialize is not really there and his intensity is so much more present. He prefers to play alone a very profound amount., There is a whole community on fb for kids Hyperlexia type 3. We are part of it though not sure if he will be or not. I will tell you I have seen a lot of kids on there who seem to fit the definition. I have felt it helpful bc my son does seem to be catching up to peers with some things we probably wouldn’t have thought a year ago. I wish they would study this more but only Dr Treffert did and that was a while back., https://exceptionalindividuals.com/about-us/blog/what-is-hyperlexia-2/
Basically someone with autism might be able to mask but they still feel uncomfortable. Hyperlexia type three isn’t masking as an adult they actually develop interpersonal skills and never had ASD just a few crossover symptoms. Just like there’s crossover between adhd and ASD., late to the party but i have hyperlexia type 3! i taught myself to read at 2 and had autistic traits (primarily in the emotional regulation, routine and structure special interests etc). i was assessed multiple times for ASD as a kid, but my parents stopped the diagnosis as it was clear the long process was actually hurting me in the long run (personally! it’s very advantageous to some people but i didn’t need any support by the point i got seen to as the waiting list was YEARS long and i’d began to grow out of traits).
socially i was neurotypical, but i am and was a massive introvert who gets extremely into what i’m passionate about, which somehow generally doesn’t align with my peers. this led to me being an outcast, as they all thought i was weird :( as an adult, i’ve found my people! i’m just rather eccentric i think 😅 found the term hyperlexia 3 and it perfectly aligned with my experiences!
i HAVE seen a specialist since then about autism, and they have come to the conclusion that i do not have it, and believe i’m somewhere along the right mark with hyperlexia 3. i’m doing just fine and i still never have my head out of a book plus i’m going to do an english literature degree!
i do think my case is rather rare though. i think a lot of the time autistic people learn to mask and hide symptoms, leading to perhaps the over promotion of hyperlexia 3, as well as being a way for parents to insist their children have autism. , This thread was started a few months ago, but I will add to it.
Hyperlexia III here
Earliest memory that is easy to track date wise is when my mom smacked me in the head because I bit her nipple (4 months old) and the second was the launch of MTV. Some memories might be earlier, but can't really be dated.
Showed lots of signs of being autistic, (had to set patterns in my steps, breathing, eyelids closing, couldn't step on cracks, diagnosed with ADHD) treated medically for awhile but it caused sleepwalking. I couldn't talk correctly (talked too quickly with little to no annunciation) I was in speech therapy until the fourth grade. Couldn't leave the house until I tied my shoes in what I considered the right pace and order.
Mom noticed I was reading at age one when she was teaching my 2 1/2 year old brother his letters by reading to him, and I kept scanning the words with my eyes, wanting to read ahead, and did the same with books that did not have pictures.
The signs of autism are mostly gone, I still have them occasionally, but nothing like when I was a kid. I have no issues dealing with people, crowds, eye or physical contact and I have performed (sang) in front of a few audiences.
I had empathy issues when I was a kid, got in a lot of fights from bullies, but my father had enrolled me in martial arts, so I broke a few noses, fingers and arms when bullies tried to pick on me. Threw my cousin through a window and my brother down a flight of stairs. I didn't feel bad about hurting people until a went on a family camping trip at the age of ten.
Two of my four kids are on the spectrum as well, but none had Hyperlexia III.
Some college, graduated with just an Associates degree. Didn't want to go into debt, needed to raise my first born (had him at 18). I Have worked in a variety of jobs, substitute teacher, tutor, manufacturing furniture, telecommunications, currently in sales. , I feel like most if not all of the parents and practitioners who get heavily invested in “hyperlexia type III” or the whole hyperlexia-not-autism argument are doing all kinds of weird mental gymnastics trying to avoid calling it autism. When my son was young that was also the case with PDD (pervasive developmental disorder) … for some reason lots of parents and evaluators thought that was a preferable label.
Autism is a spectrum. Hyperlexia exists as part of that spectrum as a social-pragmatic communication disorder with some additional features.
My son was/is hyperlexic, and the “obviousness” (for lack of a better term) of his autism is much less now than when he was a little boy, but it is still there., Never heard of it!
My son was hyperlexic, and we had increasingly bad behavioural problems in school until we had to withdraw from school and home educate instead.
I had just assumed reading at 2 was normal and when my NT kid came along I was convinced she was dyslexic because it took her so long to learn how to read. She was not. She was just normal!, My kid is hyperlexic but he’s six and this year his autistic traits have become more pronounced., Nope. We’re just good at masking😂😂, I’m hyperlexic, and my outwardly visible autism signs gradually disappeared as I got older. Spoiler alert—it’s because I got tired of getting in trouble for them so I learned to mask in front of other people at the cost of my mental health. Yay?
I’m not saying hyperlexia type III never happens. But I also think there’s a lot of square pegs out there sanding off our corners to fit into round holes., I don't know...I was part of some hyperlexia listservs back in the days before Facebook, and there were some who swore up and down that their child didn't have autism. It's a big spectrum, so there's lots of boxes you can check when kids are little...stuff like sensory issues (loud noises, sirens), tactile sensitivity (hates wet clothes, haircuts, scratchy wool fabrics), doesn't like certain food textures, doesn't have good expressive language so gets in trouble with behavior "all behavior is communication". As kids grow into adulthood, some of this will stick around and some of it will disappear or not show frequently. Then you will probably see some of the grown up issues you see the adults writing about. I think the things to focus on are having someone for the person to talk to, ideally at least one friend (can be with or without autism), and teaching Independent Living Skills (There's an assessment called the AFLS that covers all of the areas...I think the ADOS does as well. I think these are more important than the labels., When you say masking, are you also including that you can make eye contact?, Ok cool. Can you tell me about your social when younger? Any treatments you went through. How is your adult life and job(don’t need to know your actual job), I think this is the best post I have read here. Especially as hyperlexia type 3 unless misdiagnosed doesn’t include ASD. If someone has hyperlexia and ASD they are type 1 and can still grow up to mask. A type three will not be masking ASD as an adult because they never had it nor have it as an adult., https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7826637/, https://www.ssmhealth.com/blogs/ssm-health-matters/july-2021/children-who-read-early-or-speak-late, https://pubmed.ncbi.nlm.nih.gov/22324205/, [deleted], Then they don’t have hyperlexia type three, they have hyperlexia type 1.
Type three doesn’t have ASD behavior or discomfort they are masking as an adult., Hey I need to ask you questions. So my son is asd lvl 2 but with hypelexia but with pragmatic delays. Smart (score consistently in 99 percentile in math and reading) but has severe issues with being independent like putting seatbelt on, doing general stuff like wash hands, sit down during circle time. Tell me about your struggles growing up and when you saw some changes, I am type three.
I read early and have diagnosed auditory processing delay. It was rather severe.
I absolutely do not have ASD nor was I a missed diagnosis. As an adult I don’t have social anxiety or problems and there’s absolutely no masking. I had trouble with hearing language and processing it.
(If you have ASD and hyperlexia your Hyperlexia type 1), Your post definitely resonates with me. Thank you for sharing your experience., I wonder why your diagnosis is at level 2, given that you function very well 80-90% of the time. Are there challenges that you face that become limiting for you in your daily life?, How old is he now?, This sounds very similar to my daughter at that age. She is hyperlexic and her language was the same around then, knew a ton of words and could label everything but non-conversational. Her speech is developing with echolalia and I'm guessing GLP. So I'd say yes from my anecdotal experience., I don’t believe it’s officially considered hyperlexia until they can actually read. Also it sounds like he has some functional language if he can ask for things by name?, Great to hear this story, you should really be proud of him.
What symptoms did your husband have when he was growing up? Did he ever get a formal diagnosis?, What age was your son when he was diagnosed? And was PDD the only actual diagnosis he was given at that time?, My in laws thought this too about it being normal to read at two. They thought I was crazy for having him assessed for autism. Turns out, I was right. Unfortunately we are experiencing behavior issues at school too and hoping it’ll get better. If it doesn’t, how is home schooling going? Is it tough? I’m afraid it may be in our future possibly., I can. I prefer not to, but I can imitate it by looking at the bridge of the nose., No treatments in the 80s. Just "shy introverted girl". I was diagnosed in my 40s with autism, and I also have alexithymia, meaning that I don't have empathy or awareness of my or everyone else's feelings. My social struggles are mostly connected with my inability to feel empathy and it took years to build big enough rolodex of social situations and corresponding emotions to have a functional cognitive empathy. Before that it would have been beneficial to me if people just had told me what emotion should I feel instead of demanding those from me. There are emotions I can't feel at all, and there are some I can recognise vaguely.
I have several diplomas and did alright job-wise even though I had several massive burnouts. What else? I speak 3 languages: English is the third one. I have friends but I don't really socialise that much.
Edit: I had OCD when I was 6-8. Was treated with some heavy 80s medications that just knocked me out., “ASD has a lack of imagination”
Uh, wut?, Did you have ASD-like symptoms when you were young?, He’s turning 4 in a couple weeks. He does fit the generalized profile for type 3. He is very affectionate and some of the issues we once thought were issues (transitions) have completely gone away. He is mildly sensory seeking versus avoidant and self regulates really well. He has gone through periods of low eye contact and lining toys up, to normal eye contact and imagination playing with dinosaur action figures. He can speak in sentences when he wants to, he follow directions pretty well and the main thing you would notice is that he is conversationally minimal, and selectively engages in using speech when he feels like it.
It may sound great but there are some major downsides. It’s kind of lonely since I haven’t met anyone to relate with. The lower level of severity makes a difference and even in ASD1/2 groups his profile/expression is just different. It’s also problematic since it’s not in the DSM-V when you talk about it you end up sounding a bit like a conspiracy theorist. I am not in denial and I don’t need the ASD diagnosis to “go away”. I truly feel that the diagnosis was a shot-gun blast approach (a helpful one) to medically justify the prescription and expense of therapies, although what is actually occurring is much more specific., How old is your daughter now? And what was her diagnosis?, Are NT kids generally “conversational” at 2 years old though?, Not sure, but I thought being able to learn, and be interested to count numbers, letters and shapes is considered hyperlexia. Reg. functional language, we were told the same by his OT therapist, maybe he's starting to learn to put things together. He's a gestalt learner for sure, from what see.What's surprising is, he used to run off a lot when we went out, now he mostly wants to stick around us, or with us, wherever we go (except for parks and water places).Not sure how or when this happened though., He never got a formal diagnosis, no. His parents put him in kindergarten at 4 because of the reading and raised him as if he was an academically gifted but otherwise typical kid.
They ignored his speech delay, hypotonia, extreme picky eating, oversensitivity to light and sound, seeming lack of empathy, hitting, literalness, lack of pretend play, inability to form a single friendship despite his desire to, rigidity, contrarian or demand avoidant with authority figures, special interests, and that's just what he remembers and what I could get out of his in-denial mother.
Coincidentally, we have an autistic 4 year old who has been reading fluently for more than a year. He is also autistic. Our son's symptoms have a different constellation though. He is affectionate and sensory seeking unlike his dad was, but he is far less likely to follow directions. His eval says level 2 and he goes to sped preschool. We're not sure if he'll follow the same trajectory., You getting interviewed up in here 😂
If you don't mind me asking, what's your experience with alexithymia AS it's experienced? Like would you know that's what you had without someone pointing out how your experience is different?
I have extremely high cognitive empathy, though I couldn't tell you how early on, but early enough that I didn't recognize it for what it was. But I find myself so absent from not only my own feelings but from actually CARING about people and things I intellectually know I care deeply about when I'm burnt out. The lack of inclination to care about others at all, I am coming to learn is not necessarily a shared experience for most, and am coming to question how much is just being in the negatives in terms of resources to allocate to emotions or if perhaps this is more of a default setting for me than I realized.
Apparently I didn't really make facial expressions as a baby or really react to others either lol. Something that my mother mentioned off handedly to me as an adult like it was just a quirk or something, while that behavior is now recognized as a potential marker. That with many other things I had previously overlooked have me very unsure., Thank you for this., I had communication problems when I was young and still the occasional lingering challenges. I was professionally evaluated multiple times throughout my educational years and into University. I’m definitely not ASD nor Asperger’s (per previous criteria.)
One of my college professors that also studied learning disabilities related to language even recognized mine right away… completely.
Basically you will find the hyperlexia type III in the r/learningdisabilities subreddit.
I’m only in this sub as my son is diagnosed ASD 2.
Hyperlexia type III are people with non ASD learning disabilities that could read early. They just are not really in this subreddit so the answers are skewed.
ASD is not the only disability with communication challenges., Mine will be 6 in a few months? Kiddo finger (air) writes? Mine is distracting him sometimes at school, Was your son also a gestalt learner?, She's 4 and was diagnosed ASD lvl 2 at age 3. We've never been officially told she has hyperlexia but she has been reading since she was 2/3 so I just assume., Some are, some aren’t. Huge range of normal at 2., This was all the way up to age 3, no stringing of words together, no attempt to communicate with people, just labeling. I'm not very familiar with typical speech development but I know she was considered delayed and was in speech therapy at 2., I also wonder that knowing shapes letters and numbers and memorizing words before having speech like speech is really catogorized as hperlexic..or its just plain reading..any leads??, Is your son conversational now?, Thanks for sharing these details. It's incredible that your husband became the person that he is today, from where he was when his parents never got any intervention for him when he was a kid.
I have a feeling your kid would develop in the same path. Take care!, No, I didn't know that, it was a therapist who pointed out that I don't ever feel shame or even recognise people feeling shame. My best was to recognise cartoon characters in shame. I argued that I didn't do anything bad to feel shame or guilt, but she pointed out that for most people it doesn't really take much to feel it so if I were thinking that people feel shame only after murdering some puppies I was wrong. So yeah. No, I didn't know I have this deficit.
She made me do this exercise on the emotion wheel (?) so I remember several years ago I felt sadness and recognised it and still remember to this day lol.
Also, several days ago I read that people feel something ALL THE TIME. That blew my mind, honestly. My best recognised emotions are anxiety and annoyance and when I feel neither - I am just happy., He doesn’t finger write (yet?) but is also distracted by certain things depending on his mood and energy level., He appears to be but doesn’t have all the characteristics. He sometimes used ecolalia, although he never spoke in the third person or used pronoun reversals. He does study media and is very musical in his intonation at times. He sometimes uses song lyrics instead of speech such as singing“ I don’t want to eat, eat, apples and bananas” versus saying “I’m not hungry” or “I don’t want to eat.”, Yes mine is. A matter of fact , I taught him through reading. So I would write down things, when he read it, I performed it. “So I want a hug or I want juice”, I am pretty sure that being very interested in and knowing numbers, shapes, letters, etc. before developing normal speech is considered hyperlexia, Nope, he is not conversational. He only makes requests for things using their names, and even that is not 100% consistent. He just says "I want XXX" for that purpose., Interesting.. our son starts singing "XXXX, XXXXX where are you? here I am, here I am, how do you do?" for some objects he sees in front of him.
He is fascinated with shapes, numbers and letters, along with fruits and vegetables, but because he does a lot of scripting, we confirmed that he is a gestalt learner. The only phrase he uses consistently is "I want XXX", My son is just like this. He’s turning 4 next month. We used his reading skills to build up his speech and help with instructions/ transitions. He processed written direction better then spoken., My son doesn’t read full sentences out of a book, he’ll walk up to a card on the refrigerator and read/say “happy holidays” or look at a sign in a restaurant and say “raspberry ice cream please” (based on the name placard). This is NOT sight reading. We have never practiced the skill. It’s either some type of decoding skill, or possibly a very strong memory. Our challenge is less about learning the words and phrases, it’s more about motivating him to participate in conversation and also getting him to respond more consistently to prompting. He knows thousands of words and can decently express himself sometimes, he just participates verbally “when he feels like it”. He’s not avoidant. He not very shy. He can express his feelings. He says phrases semantically correct about 85% of the time and 15% of the time it’s scripting or song lyrics., I really think hyperlexia requires early reading, being obsessed with letters is part of it, but I don’t think the obsession without the reading is hyperlexia.
> Hyperlexia is when a child starts reading early and surprisingly beyond their expected ability. It's often accompanied by an obsessive interest in letters and numbers, which develops as an infant.- https://www.webmd.com/children/what-is-hyperlexia, My son did the same. I am very familiar with the finger family lyrics. He eventually moved onto planets, states/countries and monsters. He used to sing a lot, ask for what he wanted in one or two word phrases, and would then occasionally use a grammatically/semantically correct sentence leaving us baffled. For example “I don’t want to take a bath, it’s bedtime.”, My son started talking much more frequently maybe about 3 weeks after I wrote this. He seems to be doing well from a combination of music therapy and traditional speech therapy. Now that his frequency of speech is increasing I can understand some of the gestalts better. When he was done with his bath he said “Are you all done?”. I haven’t seen that he’s responding better to written directions yet. Do you also relate to the “unusual” expression of ASD?, My son does read books, although I am pretty sure he cannot read the words themselves. He remembers books by each page, and knows what comes up on each page, and reads loud some words from phrases from each page on that book. It's a bit hard to explain, but maybe he is reading them, but at the same time he definitely cannot read all words that he sees., Interesting, at his age (2y exactly), my son does quite a lot of scripting, especially when we leave him to play alone. He also does this singing on the bed, before going to sleep, and after he wakes up in the morning. One thing that's certain is that he loves music, not just rhymes but actual music made for grown ups in general.
He recently started to imitate us in everything we do, and is able to follow instructions well. He quickly gets frustrated when he tries to tell us something but can't. We are hoping that teaching him more words and more speech will address that problem., Unusual- could you give examples? I would say my son is very affectionate but it could also be a sensory seeking thing. I don’t really share his diagnosis because the times that I have people immediately say he doesn’t look ASD or I would have never guessed. Not sure if it’s ignorance or if people try to make me feel better in a weird way. the stages of gestalt language processing helped me understand how my son was acquiring language.
He would repeat questions too as a script. I just model the appropriate language back with no pressure for him to repeat and eventually he got it. So when he would say “are you all done” I immediately model “mom, I’m all done ” eventually I would just say “mom” as a prompt and then he finishes with “I’m all done”. It’s painful when he would use a script with someone who doesn’t understand his language. He would go up to an aunt and say “do you want milk” and aunt would just answer the question “no”. He would take that to mean he couldn’t have milk. Meanwhile I’m melting to intervene because I know he was asking for milk…, Very possible he is reading! We have absolutely no clue when our oldest learned to read, or how. We picked him up after his first full week of 3 year old pre-school (when he was about 3 years and 2 weeks old) and his teacher said “x is such a good reader”, and my husband and I responded with “wait, he can read?!?” 😹
Asked him when we got home “how come Mr. Jim says you can read?”, he responded with “well, OF COURSE I can read at school”, complete with an eye roll for how stupid we, his parents were for not knowing this obvious fact. Then he read us like 10 books that night. No guesses.
I think true hyperlexia requires early reading (and he was obsessed with letters from 18 months til 2.5ish, and he did know his times tables through 12 by the time he turned 3), but also delays in other areas, especially delays in communication and reading comprehension, which at 3 he did not have. Social issues didn’t become a thing til around 3rd grade, so that’s when he got diagnosed. But, yeah, he definitely learned to read fully on his own and without us knowing, so it’s a real possibility., My son didn’t do as much scripting at that age, however it could have been scripting that allowed him to meet his pediatric speech milestones. It wasn’t until he was about 3.5 that potty training triggered his anxiety and a lot of funky behaviors came up socially at preschool that we decided to have him evaluated, but he went back to being interested in playing with other kids., I generalize that most people expect ASD to mean sensory avoidant, non-hyperlexic, stimming, emotional regulation issues and socially isolated. When I say unusual I more mean that it’s not what people expect to see, just like you said. Most people are not familiar with gestalt language processing so they don’t perceive his use of language to be different. For example sometimes he says “all done” when he’s eating which is grammatically appropriate but short and others he says “are you all done?” Instead of “I’m all done” To say that he’s all done. I don’t think the affection is a sensory seeking thing with my son. He says I love you to family members and even gives hugs and kisses., Thanks for following up, I have a feeling my son's "reading" abilities will become more and more prominent as he goes over the 2y mark. The issues with reading comprehension and practical understanding may show up one day, I guess. But we're doing all we can with his therapies so it's a waiting game at this point.
How old is your son now, and what was the diagnosis he was given?, Makes sense, my son doesn't play or have any social interaction with other kids at all, when it comes to that.
Not sure how this turns out but we're currently waiting for his ABA to start. Until then we're just doing the therapies at home.
He's at the 2y mark so he started throwing things in his hands onto the floor when he gets frustrated...., I have a meeting with his school team next week, according to them he’s hitting all milestones… I was shocked and asked for IEP goals related to pragmatic speech. The hyperlexia throws off even the school staff. 80 % of the time his scripts are functional and they view them as spontaneous speech…., He is 21. His original diagnosis, at 9, was Asperger’s. He was then re-evaluated at 15, and the diagnosis then was just autism spectrum disorder. We were never given levels (they weren’t even a thing when he was 9), but he is level 1 for sure., Could be less empirical and more of an institutional difference of opinion based on the source of funding and their capacity for providing support services. A medical institution is billing you and your insurance for services. The qualification criteria is a little tighter. They generally offer more because you’re covering the bill. A non-private educational institution is funded by the state. The qualifying criteria for services is a little looser. They generally offer less. Sadly, the quality of services we can get directly correlates to the amount of money we can pay. By offering less at school, the more preferable outcome from their perspective would be for you to receive therapy services outside of school. I’ve heard from other parents that they’ve hired attorneys to do battle with school districts. I don’t know if that is or is not the case in your situation, although if you believe your son needs something the school is not offering you may have to fight for it., Great to hear back. Asd1 and aspergers are one and the same now I guess - hope he's doing well now. As a young adult his professional life might just be around the corner, take care!
|
Is this ASD?
|
As we await an assessment, which should be next month but has instead been deferred a further 12 months, I’m slowly losing the will. My little boy used to have such a good appetite. He used to clear his plate every meal time but lately he’s been so fussy in what he will or won’t eat. He will tell me he is full. Wait for me to throw the food away or purposely wait for it to go cold (refuses to eat warmed up food but I can’t blame the guy so do I, reheated food always tastes off in some way) and then start moaning that he’s hungry and wants snacks. He has recently started telling me “I’m board of eating this now” then will again wait until it’s gone in the bin and ask for snacks. As you can imagine, I’m getting incredibly worried. He’s always been a skinny boy but he just looks unwell. His GP has spoken to me about the fact he doesn’t seem to fatten up and said this is because he’s so active. But then he was eating quite a balanced diet. I’ve told him the treats are going away until he starts to eat properly again however I’m unsure if this would help?
I feel like I’m on a sinking ship and I have no one & nothing to fall back on because we are waiting so damn long for an assessment. So, could this be ASD? If so how would you approach this? Thank you if you can offer any help. I’m so disheartened and worried.
ETA: This post was just for advice as to how to broach the situation as if he does have ASD. We aren’t going to know that for at least a year.
The way a referral works here in the UK is an initial referral from the GP, Parent or School SENCO. They then send out the same paperwork to the other two to complete - so in our case the GP did the initial referral the service then sent out paperwork to his school and myself for completion. Upon return the ASD team look at all three pieces of paperwork and decide if a child is to be assessed. They have agreed to assess him based on many other issues. This is not the only issue we have this is just something that crept up on us. Yes he is verbal however his communication is lacking.
|
My little guy also turns down certain kinds of mealtime meals in favor of snacks, but now our snacks are: kale chips, whole grain crackers, lentil chips, fruit, cheese... All with no added sugar.
And once a week, we send a shipment of frozen Amy's meals to school for them to microwave for him because he'll eat those reliably., My toddler is also very snacky. He will happily eat bars all day and then pick at his dinner. My solution has been to get healthier snacks, so protein bars, (GoMakro kid bars), fruit bars (like Dinobars), MadeGood granola bars and krispie bars (which have hidden veggies), apple sauce with hidden veggies, string cheese, nuts, etc. I also throw in the occasional protein shake.
I also found reasonably healthy meals he loves and rotate them. Like, cheese quesadilla with half an avocado, Mac and cheese with carrots in the sauce, chicken meatballs with hidden carrots and celery, spinach ravioli, sweet potato or broccoli tots. I wanted to BLW and have him eat what we eat, but that doesn't happen most nights.
And he is going to be seeing an OT, so I am going to ask for ideas about how to introduce more.... You don't need an ASD diagnosis to ask for an OT referral for feeding therapy, and the waiting lists are much more shorter., Restricted eating is often a symptom of ASD, but it wouldn't be the diagnosis for just restricted eating. You could look into something like AFRID or other eating disorders like that, if it's all food related. It could also be sensory related, anxiety related, ODD related, or just a kid being a bit of a brat about it (some kids just get into battles over food as part of growing up and trying to assert independence). It would really depend what other symptoms you're seeing and what reason there is behind the restricted eating.
If it is just a kid trying to assert their independence over food, then "no snacks until you eat this" could be a legitimate strategy (a NT kid is (generally) not going to allow themselves to starve. If you remove other options, they'll eat). If it's a sensory aversion, that's just a way to put your kid into the hospital (my daughter with ASD and SPD literally had to go to urgent care because she would not put anything in her mouth after being sick. I've seen adults on the spectrum who describe it as their brains telling them that a non preferred food is poison and they WILL die if they try it. No matter how hungry or how much they want to logically try it, they need therapy before it will go in their mouth because they *can't*). At many points, we've had to go to "calories are calories" for my daughter (has only eat banana bread this week? At least she's not on a feeding tube in the hospital!) Whatever she's willing to eat, we give her while we work with her feeding therapist to get her to eat a healthier diet (we recently got her to accept cheese, which is great, since that's a steady protein source!) But yeah, it sounds like you need to figure out the root of your son's problem, since that will greatly affect how to address the issue., For your own peace of mind, try vitamin gummies or drops. If he'll drink chocolate/strawberry/ whatever flavored milk, you can supplement with Pediasure, Carnation Instant Breakfast, or other supplemental shakes.
It sucks when our kiddos won't eat, but you can at least do this to get some more nutrients in him.
Try some fun plates if you can find anything with his interests, or one of those treasure hunting plates so meal time feels like a game.
Best of luck to you!, With the information you’ve given, which mostly centers around eating issues, no one here can conclusively tell you this is autism. There is an eating problem called ARFID that can definitely be associated with ASD, but I’ve known kids to have that with no other diagnosis. So if that’s his only issue I doubt he would be diagnosed with autism. With your evaluation being delayed 12 months, I would say get him in to an OT and/or a dietician who specializes in childhood eating issues. The OT can work on the sensory and fine motor issues that may affect his eating behavior. Dietitians have all sorts of creative ways to get kids to eat. You could always try pediasure or a similar supplement “milkshake” if he will tolerate that. That way you could address the eating behavior prior to the diagnosis and hopefully prevent him losing more weight. BTW, I am sorry you were jumped on for posting here. Autism is a spectrum and having a less severe kiddo doesn’t invalidate your concerns. Please fill us in on any other symptoms and maybe someone here can help beyond the feeding suggestions! Feel free to pm me. Could any of this be a control issue. It sounds like he’s exerting a lot of control over you with these behaviors. Is there a new sibling or other change that could be leading him to try to control you/his environment via food choices?, I just make sure my sons got calories, and then I provide protein drinks and vitamins. All I can do., I would also assume since the Drs pushed back the eval for 12 months they are also assuming this is not ASD so they are not rushing to do an evaluation.
I can only speak from my own experience in the US. I know after a call from my child's pediatrician the behavioral specialist called and gave us an appt 8 weeks sooner than our originally scheduled appointment because she felt getting him diagnosed sooner would help us obtain resources to guide us on our journey.
From that perspective, it seems to me that they are under the impression that what you're dealing with has nothing to do with autism so they are pushing the appt back.
I'm not too sure why, if picky eating is the only issue you're dealing with that you would automatically correlate it to autism without any other symptoms being present. Can you get an appointment with a nutritionist or someone that deals with food diversion issues any sooner than you can be seen for the autism evaluation? If that was the only severe symptom my son was presenting with I would start first with a nutrition specialist.
Whatever you choose to do, I wish you luck with this journey and I hope you get the answers you and your family needs., It could be an autistic trait. I will give my 3 yo a combination of a protein, fruit, and veggie at each meal from a small list of things he tolerates. Some days he is a grazer, some days he won’t eat til dinner time. He had the same issue as your child last summer and was losing weight. But now that we know he’s autistic, and about the trauma that can come from being forced to eat (not for all autistic people, but many), we stopped pushing and let him try new things on his terms. We allow screens during meals, which we didn’t before, and that helps him stay at the table a little longer. Hope you figure his quirks, and know he will be ok :), If you think he could be autistic, my advice would be to treat this as an aspect of autism until you learn otherwise. I say this because despite what many parents of NT kids think, there is a huge difference between picky eating and sensory food aversion. My son is three and has had restricted eating issues since he started on solid foods. He will starve himself rather than eat something he views as unsafe. I know this because he starves himself at daycare all day long rather than eat served lunch. He's not being stubborn. He finds certain foods threatening. It sounds like this is a recent development for you, but I have heard of such issues developing or worsening in older autistic children. I wouldn't panic yet, but look into OT to work on feeding issues. No matter what you have a child who has suddenly changed his eating habits so it's a safe bet something needs to be addressed. I feel like I'm watching my child like a hawk to prevent him from developing ARFID, sometimes he loses interest even in his few preferred foods. But the truth is we have no control over this. I'm sorry you have to be in that boat. Because this is new behavior for him, and it sounds like he has some communication skills, you might have better luck with feeding therapy., Your son isn’t _“board”_ of certain food - he is _“bored”_ of it.
Many parents in this sub are dealing with cases of extreme autism where their children are non-verbal, are violent, continually run away, have severe sleep issues and worse.
You coming here to ask about your son verbalising to you that he is _“board”_ (sic) with your cooking is tone deaf to this sub.
Take your child to a paediatrician and learn to make more appetising food., If your son waiting to eat until he gets "treats" (and boredom is his only reason for not eating) is the only ASD symptom he experiences I doubt it is ASD, however, no one here can tell you based on this account alone. Given you state he's long been eating a balanced diet and still eats plenty of fruits and veg, it doesn't *seem* like he needs feeding therapy. It sounds more like he wants treats and has been provided such. I know with mine the food aversions have been lifelong, and a refusal to eat can last through multiple meals. Even treats aren't enticing and there's aversions based on texture, color, mixing items, etc.
Have you tried making the meals more exciting and eliminating treats? Like make scenes with the food, cut the food into fun shapes, try new and different fruits? Also can try to slip nutrition in other ways, like smoothies with nutritional powders or slipping veg into batters, etc.
If he has sensory issues, OT can help greatly., I mean if this is his only symptom I wouldn't say autism. What other things have you noticed?, How old is your LO, I don’t think the restricted election of food is a reason to think in ASD. Most kids struggle with some kinds of foods, textures, etc. Is there something else that makes you think he’s on the spectrum?, Could be. Definitely keep notes for when you do get to that assessment.
Have a look at the change for a ‘no surprises’ trigger - did something happen and he had foods he likes that one time was off/badly cooked/had a contamination in it (stray hair or the like)? That may explain the sudden change. Tastebuds change as we grow, so you may have hit one of those changes, too.
Have a look at the snack choices - are they items that are exactly the same each and every time?
There’s a reason for the stereotype of chicken nuggets and plain, bland food - they are the same each and every time. No risk of a sour or squishy or too hard or under ripe or anything else strawberry. That crisp (assumed) he’s going for as a snack is the same flavour and texture each and ever time.
My son has the mixed food aversion for things like stews and stir-fry; but burgers, wraps, tacos and loaded hotdogs are fine 🤷♀️. So we do a lot if those in summer.
Ways I manage include always have safe foods in each meal. A back up option (cheese sandwich is our go-to, and Mr 7 can make it himself). Routine meal planning - eg Monday is always pasta (and I can hide purée veg in the sauce), home-made pizza once a week and a small rotation of meals. Always Carrot and cucumber sticks available rather than cooked carrot because he hates that texture.
I do have meals that the rest of the family like that he doesn’t, and provide a back up so the rest don’t miss out on favourites. I do run a’try, then you can have something else’ policy, but often he just looks at the plate and says ‘I don’t like that’.
For the purée veg - I fill my slow cooker with a whole mix of veg and cook them down. Blitz with a stick blender, then freeze the cooked veg in muffin trays. Store the pucks in ziplock bags in the freezer and I’ll put one or two pucks into tomato or minced meat based meals., Could you get a referral to a dietitian? They could look at possible AFRID and advise on the nutrition side of things.
Take note of any patterns-
is it specific textures (eg he’ll eat the same food but in different forms like a raw carrot vs a cooked carrot), are there certain textures he’ll avoid like mushy food, crunchy food, etc.? Will he eat beef when it’s ground but not like a steak?
Is it the way food is presented (eg he’ll eat corn when it’s on a Cobb or separate on his plate but won’t eat it all mixed up with other food in a fried rice or a burrito, etc.)
Is it certain flavours (eg stronger flavours, creamy flavours, spicy, bland, etc.)?
Does he like ‘saucy’ foods like pasta with sauce or serving things with ketchup or ranch, etc?
What foods will he eat to cover certain vitamins/minerals? Eg if he doesn’t eat veggies can he get his fibre and vitamins from fruit? If there is risk of deficiency then would his doctor recommend supplements?, Thank you so much for this!! He’s been this way ever since he was a toddler tbh back then I would just leave bowls of fruit snacks about for him to pick so I’ve always known he’s more of a grazer but even then he still polished off all his meals. He got into this routine of having to have 2 snacks at a time then it was 3 then it was 4 but I’ve had to put my foot down with him now and say no more because he was even doing ot with his snacks he’d open them, eat half then say he’s bored & throw it away.
Eating has always been stressful with him on and off I think that’s why I’m stressing about it so much. I only wanted to know if I withdrew the “treats” how that would impact him if is *is* ASD. I don’t want to punish him as an NT if it’s something he can’t help I just wanted advice how to navigate it., >I've seen adults on the spectrum who describe it as their brains telling them that a non preferred food is poison and they WILL die if they try it. No matter how hungry or how much they want to logically try it
The analogy I use came from my afghan friend years ago from a Pakistani run pizza joint I moonlighted at. He was the son of a diplomat and grew up very westernised doing things his fellow countrymen would call evil and haram, but still didn't eat pork. He explained they just didn't grow up around it regardless of not caring what the quran says. Its like if I cooked and served you a dog. No matter how hungry you are you're going to say that is disgusting and absolutely refuse to eat it., I mean that’s really the issue, I need to find out the root cause and I have no idea where to even turn to find it. Like I say, his GP just says he’s fine but he is gradually getting more and more fussy. The one saving grace for me at the moment is that he still will eat as much fruit and veg I put in front of him. You are right. I should look at it as at least he’s not on a feeding tube and still at least eating small amounts. Thank you. I hope your daughter is doing well! X, There are a lot of little things that make us think ASD and a lot of them mirror his cousin who has diagnosed ASD but again he’s not severe at all he’s in high school and is an amazing kid but my sister can be difficult to ask advice as she feels I’m “hopping on the bandwagon” even though she would never say it. He does attempt to assert dominance with me particularly. We’ve been a single parent household since he was 2 and tells his dad that in this house he’s the boss which is not true in the slightest but as he has this mindset he is extremely resistant to any sort of change or discipline I enforce., No that’s not the reason, the reason is they’re making all the children who are in the care system or have been permanently excluded from school a priority because the service is so stretched. At the moment it’s a 3 year wait if you get referred in now.
As explained in my edit this isn’t a reason I think he has ASD it was more a question of, is this something that children who are diagnosed also have issues with or is he’s just being fussy and trying it on with me., Thank you, This the inverse of the behavior of communities like /r/autism that pretend like they own autism and marginalize severe level 3 cases like they don't exist and autism is just "quirky" behavior.
We can do better than that.
I have 4 children and 3 are diagnosed and 4th is likely ASD as well. They're all over the spectrum including my second child who is severe. Yesterday when we stopped at the outlets, she wanted to go shopping and was handing me her shoes and very faintly said the word "go", completely unprompted. That little word made me so happy and something to be celebrated. I get that struggle all too well. But it doesn't take away anything from the struggles with our oldest who had no speech delays, can have full conversations, but yet is looking like skin and bones and has extremely rigid interests and eating habits mostly subsiding on nothing velveeta, chicken nuggets, and sugar., I’m sorry that there are children that are worse off than mine however that does not mean I am not allowed to ask questions in this sub.
As stated he is awaiting an assessment. I’m from the UK and he has to be referred by his GP and accepted for the assessment it isn’t just booking an appointment. Therefore there must have been other things in his referral that made them add him to their extensive wait list. I’ve been waiting years already for this assessment and had it pushed back again. All we know is that there is *something* but we don’t know what. I have asked if this could be a symptom, if other children have the same issues with food because I have no one else to ask. I wanted advice on how to tackle this situation. It’s giving me server anxiety as a mother. Apologies if this has inadvertently upset you in some way but I am not sorry for asking the question.
I make plenty of home cooked meals and he will also ask for specific foods and still have the same reaction. I wanted to know if anyone had any advice and that isn’t wrong of me.
As you know ASD is a spectrum. Just because my child is verbal does not mean he can communicate well. You know what I’ve told you in my post. I’m also dyslexic so spelling mistakes are bound to happen., I’m sorry you’re dealing with a severe case of autism but being condescending to another parent about their grammar and cooking and implying that they don’t take their child to a pediatrician when they are actively seeking an eval doesn’t help anyone. We are all parents trying to cope with issues and here to help each other along in the process. This should be a safe place to ask questions without being shamed., Yes he won’t drink a smoothie because it’s all different things mixed up. He has a lot of things going on which lean towards ASD and as of yet nothing has been ruled out. He has never been particularly adventurous with his meals he never ate as I ate as a toddler but he does get fixated. He doesn’t like food touching, when I make cottage pie, his has to be deconstructed. He will opt for beans on his school dinner but claims he doesn’t like them at home. He will ask for a McDonald’s and then not eat it - he also did this on his birthday when he asked for a Chinese takeaway and then didn’t eat it. Plus my purse is feeling the strain of this issue causing me more stress., 8, If you have a read of my other replies I’ve noted a few of the things that make us think ASD. This post was just for advice on how to approach this if it is an ASD issue., Hang in there. Food troubles are SO stressful (it's been 2 years since we had to put my daughter on an IV following that illness--since nothing in her mouth included liquids. Then we had horrified nurses running in to make it an IV with sucrose, because her blood sugar was also so low that by diluting it just with saline to get her hydration back up, they could have put her into basically diabetic shock--and I still have to stop panic attacks when she gets sick and isn't eating well),
Depending on your insurance, you may be able to get in more quickly for just a feeding therapy evaluation. You don't need an ASD evaluation or anything else to get one of those and some places allow you to self refer. A SLP will then be able to talk with you/evaluate if they see any issues, which would at least possibly get you on the right track, even if they don't think your son needs actual feeding therapy., That’s tough. If you do start working with a dietician or OT maybe they could develop a system of rules around meals and snacks that you both agree to follow. If there’s consistency across the two households it might help. I know it must be scary to feel like he isn’t physically thriving. Also another thing that helped my son with eating (he did not ever have super severe issues) was running track. If the coach told him he needed to avoid fried food the night before a track meet, he would listen to him way more than he did to me. He was hungry from the exertion and his palate expanded greatly during this time. So maybe try a sports team and see if the coach could help coax his into eating better. Just brainstorming., Yes, food avoidance is definitely something kids on the spectrum may deal with.
The way the Dr explained to me was it's called a spectrum for a reason. Some on one end of the spectrum may have little to no "symptoms" while children on the other end may need 24 hour care (I'm sure you already heard that) But, both children may or may not have food avoidance. Just like some children may be verbal while others are not.
But the food avoidance in autism usually isn't due to being "picky" My child doesn't like the feel/ consistency of certain foods and there's nothing I can do to make those foods more palatable. Many times a food went into his mouth and then was spit out across the room. (Cauliflower being one of them, yet he will eat broccoli 🤷♀️)
I will also repeat what I have seen above in the comments. Any calorie intake is better than no calorie intake. Watching a child hooked up to feeding tubes because of organs shutting down to malnutrition is no joke. I have PTSD because of it. At this point, the reason why he isn't eating the foods shouldn't be the main concern. Just making sure he has enough calories to sustain him should be the focal point. But everyone runs their household their own way. Again, I wish you well on this journey., I agree that you shouldn't be sorry. You have a valid concern, and this sub isn't only for parents of level 3 kids. (Mine isn't.) Feeding problems are so stressful, especially if they seem to be impacting the kid's health., You shouldn't be sorry but it sounds like your son only has an issue of wanting to eat snacks and every nt child does this. Unless your child has a lot more symptoms of ASD you're wasting your time getting him evaluated because he's clearly verbal and you haven't mentioned any other signs so what I'm saying is one thing like not wanting to eat certain foods does not come close to autism., Oof, my kiddo is 2 and a half and my NT daughter is 8. I wish I could give you some advice but unfortunately I’d be talking about something I had not an inkling of knowledge on. This forum is an amazing place to post to when needing explanations like this, so at the very least I can tell you that you’ve come to the right place and I guarantee somebody who knows what you’re going thru or at least is familiar with the situation is going to comment any day now. Good luck!!❤️🙏, Unfortunately I’m in the UK so I honestly have no clue about any of this. I’ll speak again to his GP. Hopefully I can start a food diary and weight diary and take that to him and see what he says then., He is a very very active kid and he will listen to anyone that’s not me. This isn’t a bad idea thank you x, I wanted to know if kids with diagnosed ASD also have had the same issue and how this was overcome. I don’t want to punish him as NT when we don’t know he isn’t ASD. The list is long and extensive which makes us lean to ASD however it’s entirely possibly that there is a different underlying condition. The list is extensive. He is prone to explosive outbursts which can result in him hitting and biting himself. He can speak to me but he isn’t great on communicating. He won’t freely offer information I have to specifically ask for it. Such as when we had covid he only asked to stay home from school when I said I was staying home from work. When I asked if he felt poorly he said “only a bit” he also turned out to have covid. As I say there are many many things but I’d like to respect his privacy. To be referred for an assessment here, the GP has to refer; then the parent has to fill in paperwork and the school before they’re even considered to be accepted. If he’s been accepted there is obviously signs that he could have ASD., Thank you so much. I’ve posted previously and there was a lady with ASD who answered one of my questions she was so insightful to speak to. It’s just so difficult when we don’t even know if it is ASD. Thank you again for your kindness I hope it is returned to you x10 xx
|
Is this a cruel joke..
|
I’ve decided once a month, I’m going to take a full day off work while my son is in preschool and aba, and just get shit done I need to get done or relax.
Today is that day. I’ve really needed this and been so excited about it.
Well, his therapist cancelled for today and he decided to wake up at 2am today and not go back to sleep, which means when it’s time to get ready for preschool in an hour, he’s going to be miserable and the preschool will probably call me around 9am to come get him because he won’t stop crying.
He does not nap at all, even if he stayed up all night. So that won’t be happening.
I’m not even surprised. Just really frustrated.
|
Oh, the infamous Murphy's law 😭 so sorry. It's like they _know_ it somehow. Hope you still have a somewhat nice day 🫶, It is stunning how disappointing it is when you are anticipating "time off" and it doesn't happen., I can't count how many times that magic has happened over the years., Omg I am so sorry to hear. You deserve a different day of relax and getting shit done!, I can totally relate! Today was a day I consciously decided to take off work just to regroup and rest. Today my 6 y/o decided he didn't want to go to school, and refused to get out of the car. It took both the school psychologist and the special ed teacher 30 minutes to coax him out. It was so stressful, I cried for nearly an hour afterwards, and now my day feels totally shot.
As you said, not surprising, just frustrating., Same! Once my son got sick and he missed classes for a whole week. After that, we had a hell of a time getting him back into his routine, and I had to pick him up a couple of times because his sleep schedule was all bonkers. I was bonkers. Thankfully, he's back to his old self, and the only remnant of those days is his eating habits are still really bad, and he is prone to crying bouts before bedtime. I dread him getting sick again.
On the upside, I try not to make plans and do things on the spur of the moment. Unfortunately, I still have to stay in town in case I get the infamous call to pick him up. I've even done solo impromptu lunch dates with myself just to destress. As much as I'd like to get things done all at once, I'm pretty happy with doing one thing per school day, and it gives me something small to look forward to as well., Chin up girl. Everyday is different. The preschool should do more to provide him an environment where he feels regulated. I live in Australia and I am not sure where you live and the laws maybe different. Do you have family around maybe they could support.?, This happened to me about 2 weeks ago, except I hadn’t taken off work (I work for myself) but I had about 500 really important things to get done that day, and accomplished nothing when both the ABA therapist and sitter (who also watches my 9 month old) canceled.
I’m sorry. It sucks., i feel you!! any time i have plans for something, or i need to get extra sleep because it’s a big day, i *never* say it in front of my daughter because if i do, without fail, she will have the world’s worst sleep and be off the walls all day lol
i’m sorry things didn’t go how you planned!!, For me it seems like every time we have somewhere to be, he’s twice as grumpy as usual… like before we even leave lol. It doesn’t matter if he’s aware that we are supposed to go somewhere that day or not. Or today for example.. it is 10 degrees Celsius in February in Canada (not normal), so I planned on taking him to the park. I NEED this because I have been cooped up with him all day every day for months. I don’t work currently since the school doesn’t keep him long enough and I have no one suitable to babysit so it’s been Aaallll meee lol. And all I did was tell him we would go to the park after his brother came home for lunch (so I could be there), and I guess he thought brother was coming along since he didn’t let me finish my sentence, and for some reason that made him REALLY mad. He wouldn’t let me explain myself. It was so frustrating. Like why is he on a good streak for weeks and then the one day it’s nice out he’s extremely grumpy lol. He did chill though.. progress is progress.
I kind of wonder if it’s what WE are expecting of them. I know it sounds weird, but I have a hunch that the way people perceive us or expect us to be, even from a far distance, affects how we actually feel and behave. I see it happen. That’s why I have stopped saying “this always happens when..” about something negative, and other things of that nature, because I feel like I make it happen haha. And honestly, since I’ve been watching my thoughts and words, it seems to have made my life easier honestly. The thing with today is that I haven’t practiced my positivity around going to the park since it’s been too snowy to go for a while. Anyway, food for thought, For us, it's that our little guy always gets sick on days my husband and I take off together. Like every time, without fail. And not just like a little runnynose, he can go to school sick - like vomiting or fever, there's no way he can go to school sick. Every time, Just sucks doesn't it., This is why we track new moons in our house (it was last night fyi), Why not give him melontonin??, Yup. Every single damn time.
|
Is this child abuse?
|
Appreciate you all and what everyone is going thru. Here is my story:
We have a 2 month old, an 11 year old and our autistic, non verbal 7 year old, D.
D's been an angel. Never fought, hardly cried, always does what we ask and just as sweet of a kid as you can ever ask.
In September of this past year he began hitting himself in the head as hard as he can. Picking at his skin until he bleeds.
We got him a rugby helmet and some winter gloves and seem to need those most of the time now. Nobody knows why he is doing it. No medication is helping. He screams while he does it, and its during school, therapy, at home, in the car, at meals. When it's after we eat or after he sleeps we know that (hungry/tired) is not the cause. Neither are noises, sights, not even directly jealousy of the little brother. No pain like migraines, molars, or any other physical condition that a doctor has diagnosed.
We dont know what's causing this. Nobody seems to. Do you have any ideas?
So we started to wrap him up on a blanket or sheet. Sometimes we have to use an old karate belt to tie his hands together because he wiggles out. He doesn't whine or scream when we do it, other than the normal screaming while hitting his head. Almost seems like he is somewhat at peace with it because he'll just look at us with his sweet expression and then try to bash his head.
But he cant be ok with it, right? We have to do it when he falls asleep. We have to do it to attend our newborn. Otherwise he'll just beat himself senseless and into exhaustion. If my parents read this, they would weep. I pray for grace, but it doesnt always come.
What could this be? And is it ever ok that we are wrapping him (tying him up) like this?
|
My son had SIB when he was small. Also non-verbal and no diagnosed source of pain. But, that doesn't mean there wasn't pain. He had no way to say.
Definitely talk to the doctor to rule out gastrointestinal pain because kids with ASD are prone to that.
In the meanwhile, we used "no-no's" on my boy's arms to keep him from hurting himself...idk if they would help you. We would put a long sleeved shirt over them (had to go up a few sizes because these things are bulky) so he couldn't take them off with his teeth. [Here is a link to their website.](https://www.nono-armhelper.com/?gad_source=1&gclid=Cj0KCQjwwYSwBhDcARIsAOyL0fiHiJgIZFHcYgvPARmXoWGVisgyhnSJdfcTdSkTLlAZXZu7zkWgyJcaAknuEALw_wcB), Few things :
1. Does he have some means to communicate basic needs / emotions like AAC (pictures to voice), PECS, basic ASL, anything?
2. This could be a rabbit hole but there’s a whole alternative universe of medical maladies associated with autism. I wouldn’t want you to get there coz you’ll go crazy but the bare minimum is to check for gut health (his diet) . It’s paired to regularly of bowel movements all the way to color and texture, gross but the health of his bowel movements could mean that he’s missing some nutriments that exacerbate mood swings . Typically a blood panel test is the basics to rule out deficiencies and other problems that could be offset with diet modifications and dietary supplements, and X-ray to check constipation , look for a pediatric GI doctor
3. When self - injury can’t be reduced with therapeutic interventions then a pharmacological treatment is imperative, it could take months to find the right dosage or prescription but it’s better than going years with degenerative self-injury
4. Sleep is also very important, how is his sleep?
5. Really he needs a 1:1 direct support professional at home all day long, to block and redirect self-injury . Look up your county and state developmental and intellectual disability services, if you don’t qualify seek for a waiver or a diversion crisis slot t, My son went through a time of doing this after I divorced my ex husband. It could be a trauma response to the change of having a new sibling in the house. I know it’s so scary though, and bless you for you doing all you can.
Since he seems to like being wrapped up, maybe talk to his doctor about a compression vest. Praying for you!!, Have you tried a sensory sock?, I think you’re dealing with very difficult circumstances and don’t have any perfect options. Have you ever tried squeezing his arms and legs firmly when he hits himself? It might provide some of the sensory input he’s seeking. I second the weighted blanket, too., Lots of autistic kids like deep pressure. There are several items out there to try - sensory sock, compression vests, weighted vests, weighted blankets. There are also these things that look like a plush cozy canoe that the person can sit in and feel pressure all around them. There are also sensory swings - some that are even made to hold the person in close with some pressure.
I’d also try giving him some ibuprofen or Tylenol. If for some reason he’s in pain, that might help and give you some idea what’s happening. Also make sure he’s not constipated.
All of this could be from pregnancy + newborn. It’s a very stressful time for autistic kids, with a big change in their lives. Even good changes can be hard., You are doing everything in your power to protect your kids. That isn't abuse. Have you tried a weighted blanket? What is holding you back from medication? Have you talk with someone about this?, Maybe try one of these? [Amazon.com: Sensory Body Sock for Kids, Full Body Sock Wrap for Autistic Children to Relieve Stress, Relaxing Sensory Sack for Kids Sensory Processing Disorder for Kids 9-12 : Health & Household](https://www.amazon.com/Autistic-Children-Relaxing-Processing-Disorder/dp/B0CKX6Q9Y2/ref=sr_1_2_sspa?crid=315UV5GYG36FF&dib=eyJ2IjoiMSJ9.z3FRSGs_fM39TG5yVddQfAguObXTzeDp-5aaKhJImmQlY7o6M_UHTTfM1P_b5CeDSSMuR_4oK5xIQnl-kRwV3CszU665S-pt6AG_Mm_mq7cR3cdSvaldWH4kk5K8NUzio-4MXsikpSvMP2pr_xObYrHzsgkdE1itnpsyfjzHTxBEqHRT6266l7M_cprqprlR_tpdfFVleK-wMvsySHItjc_QdwAkiyxVlNv4l1z4hAGhbYVJlT2wzuo5sYpYJHFMkI1WvFxTnCsGg4cenPzhbda46-QAeSbLauG_DkR74aY.-ylMt_PmbdDXCGmlTyC6lCjscxTzVfMuB38qcekvx3w&dib_tag=se&keywords=autism+sensory+wrap&qid=1711460532&sprefix=autism+sensory+wrap%2Caps%2C104&sr=8-2-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1), OMG!! This could be the solution. Bless you. Bless Reddit!! BOOYA. Buying now, not even looking the cost., Thank you!!, Appreciate the insight! Yes, he can communicate with sign language but when he's in an episode it's hard to get him to pay attention. He almost goes cataonic. BM's are good, we've done the full panel on allergies and all that :( THANK YOU for repsonding!!, Just bought one! But will it keep him from being able to punch himself in the head?, Right on, thank you!, tHANK YOU!, Hey, cheers! Weighted blanket gets tossed but appreciate the suggestion. We just started Abilify, but not working quite yet. Lets see! Gods hands. Just wanted to check in with the public to make sure I wasnt being super selfish with this "solution.", just got one, lets see :) Thank you!!, I hope they work!, They have button closed ones. You can close him in to his neck. Arms can go up too so that might help., I hope it works! Some stretchy stimuli may help!! :), My son had SIB when he was small. Also non-verbal and no diagnosed source of pain. But, that doesn't mean there wasn't pain. He had no way to say.
Definitely talk to the doctor to rule out gastrointestinal pain because kids with ASD are prone to that.
In the meanwhile, we used "no-no's" on my boy's arms to keep him from hurting himself...idk if they would help you. We would put a long sleeved shirt over them (had to go up a few sizes because these things are bulky) so he couldn't take them off with his teeth. [Here is a link to their website.](https://www.nono-armhelper.com/?gad_source=1&gclid=Cj0KCQjwwYSwBhDcARIsAOyL0fiHiJgIZFHcYgvPARmXoWGVisgyhnSJdfcTdSkTLlAZXZu7zkWgyJcaAknuEALw_wcB), Few things :
1. Does he have some means to communicate basic needs / emotions like AAC (pictures to voice), PECS, basic ASL, anything?
2. This could be a rabbit hole but there’s a whole alternative universe of medical maladies associated with autism. I wouldn’t want you to get there coz you’ll go crazy but the bare minimum is to check for gut health (his diet) . It’s paired to regularly of bowel movements all the way to color and texture, gross but the health of his bowel movements could mean that he’s missing some nutriments that exacerbate mood swings . Typically a blood panel test is the basics to rule out deficiencies and other problems that could be offset with diet modifications and dietary supplements, and X-ray to check constipation , look for a pediatric GI doctor
3. When self - injury can’t be reduced with therapeutic interventions then a pharmacological treatment is imperative, it could take months to find the right dosage or prescription but it’s better than going years with degenerative self-injury
4. Sleep is also very important, how is his sleep?
5. Really he needs a 1:1 direct support professional at home all day long, to block and redirect self-injury . Look up your county and state developmental and intellectual disability services, if you don’t qualify seek for a waiver or a diversion crisis slot t, My son went through a time of doing this after I divorced my ex husband. It could be a trauma response to the change of having a new sibling in the house. I know it’s so scary though, and bless you for you doing all you can.
Since he seems to like being wrapped up, maybe talk to his doctor about a compression vest. Praying for you!!, Have you tried a sensory sock?, I think you’re dealing with very difficult circumstances and don’t have any perfect options. Have you ever tried squeezing his arms and legs firmly when he hits himself? It might provide some of the sensory input he’s seeking. I second the weighted blanket, too., Lots of autistic kids like deep pressure. There are several items out there to try - sensory sock, compression vests, weighted vests, weighted blankets. There are also these things that look like a plush cozy canoe that the person can sit in and feel pressure all around them. There are also sensory swings - some that are even made to hold the person in close with some pressure.
I’d also try giving him some ibuprofen or Tylenol. If for some reason he’s in pain, that might help and give you some idea what’s happening. Also make sure he’s not constipated.
All of this could be from pregnancy + newborn. It’s a very stressful time for autistic kids, with a big change in their lives. Even good changes can be hard., You are doing everything in your power to protect your kids. That isn't abuse. Have you tried a weighted blanket? What is holding you back from medication? Have you talk with someone about this?, Maybe try one of these? [Amazon.com: Sensory Body Sock for Kids, Full Body Sock Wrap for Autistic Children to Relieve Stress, Relaxing Sensory Sack for Kids Sensory Processing Disorder for Kids 9-12 : Health & Household](https://www.amazon.com/Autistic-Children-Relaxing-Processing-Disorder/dp/B0CKX6Q9Y2/ref=sr_1_2_sspa?crid=315UV5GYG36FF&dib=eyJ2IjoiMSJ9.z3FRSGs_fM39TG5yVddQfAguObXTzeDp-5aaKhJImmQlY7o6M_UHTTfM1P_b5CeDSSMuR_4oK5xIQnl-kRwV3CszU665S-pt6AG_Mm_mq7cR3cdSvaldWH4kk5K8NUzio-4MXsikpSvMP2pr_xObYrHzsgkdE1itnpsyfjzHTxBEqHRT6266l7M_cprqprlR_tpdfFVleK-wMvsySHItjc_QdwAkiyxVlNv4l1z4hAGhbYVJlT2wzuo5sYpYJHFMkI1WvFxTnCsGg4cenPzhbda46-QAeSbLauG_DkR74aY.-ylMt_PmbdDXCGmlTyC6lCjscxTzVfMuB38qcekvx3w&dib_tag=se&keywords=autism+sensory+wrap&qid=1711460532&sprefix=autism+sensory+wrap%2Caps%2C104&sr=8-2-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1), OMG!! This could be the solution. Bless you. Bless Reddit!! BOOYA. Buying now, not even looking the cost., Thank you!!, Appreciate the insight! Yes, he can communicate with sign language but when he's in an episode it's hard to get him to pay attention. He almost goes cataonic. BM's are good, we've done the full panel on allergies and all that :( THANK YOU for repsonding!!, Just bought one! But will it keep him from being able to punch himself in the head?, Right on, thank you!, tHANK YOU!, Hey, cheers! Weighted blanket gets tossed but appreciate the suggestion. We just started Abilify, but not working quite yet. Lets see! Gods hands. Just wanted to check in with the public to make sure I wasnt being super selfish with this "solution.", just got one, lets see :) Thank you!!, I hope they work!, They have button closed ones. You can close him in to his neck. Arms can go up too so that might help., I hope it works! Some stretchy stimuli may help!! :), My son had SIB when he was small. Also non-verbal and no diagnosed source of pain. But, that doesn't mean there wasn't pain. He had no way to say.
Definitely talk to the doctor to rule out gastrointestinal pain because kids with ASD are prone to that.
In the meanwhile, we used "no-no's" on my boy's arms to keep him from hurting himself...idk if they would help you. We would put a long sleeved shirt over them (had to go up a few sizes because these things are bulky) so he couldn't take them off with his teeth. [Here is a link to their website.](https://www.nono-armhelper.com/?gad_source=1&gclid=Cj0KCQjwwYSwBhDcARIsAOyL0fiHiJgIZFHcYgvPARmXoWGVisgyhnSJdfcTdSkTLlAZXZu7zkWgyJcaAknuEALw_wcB), Few things :
1. Does he have some means to communicate basic needs / emotions like AAC (pictures to voice), PECS, basic ASL, anything?
2. This could be a rabbit hole but there’s a whole alternative universe of medical maladies associated with autism. I wouldn’t want you to get there coz you’ll go crazy but the bare minimum is to check for gut health (his diet) . It’s paired to regularly of bowel movements all the way to color and texture, gross but the health of his bowel movements could mean that he’s missing some nutriments that exacerbate mood swings . Typically a blood panel test is the basics to rule out deficiencies and other problems that could be offset with diet modifications and dietary supplements, and X-ray to check constipation , look for a pediatric GI doctor
3. When self - injury can’t be reduced with therapeutic interventions then a pharmacological treatment is imperative, it could take months to find the right dosage or prescription but it’s better than going years with degenerative self-injury
4. Sleep is also very important, how is his sleep?
5. Really he needs a 1:1 direct support professional at home all day long, to block and redirect self-injury . Look up your county and state developmental and intellectual disability services, if you don’t qualify seek for a waiver or a diversion crisis slot t, My son went through a time of doing this after I divorced my ex husband. It could be a trauma response to the change of having a new sibling in the house. I know it’s so scary though, and bless you for you doing all you can.
Since he seems to like being wrapped up, maybe talk to his doctor about a compression vest. Praying for you!!, Have you tried a sensory sock?, I think you’re dealing with very difficult circumstances and don’t have any perfect options. Have you ever tried squeezing his arms and legs firmly when he hits himself? It might provide some of the sensory input he’s seeking. I second the weighted blanket, too., Lots of autistic kids like deep pressure. There are several items out there to try - sensory sock, compression vests, weighted vests, weighted blankets. There are also these things that look like a plush cozy canoe that the person can sit in and feel pressure all around them. There are also sensory swings - some that are even made to hold the person in close with some pressure.
I’d also try giving him some ibuprofen or Tylenol. If for some reason he’s in pain, that might help and give you some idea what’s happening. Also make sure he’s not constipated.
All of this could be from pregnancy + newborn. It’s a very stressful time for autistic kids, with a big change in their lives. Even good changes can be hard., You are doing everything in your power to protect your kids. That isn't abuse. Have you tried a weighted blanket? What is holding you back from medication? Have you talk with someone about this?, Maybe try one of these? [Amazon.com: Sensory Body Sock for Kids, Full Body Sock Wrap for Autistic Children to Relieve Stress, Relaxing Sensory Sack for Kids Sensory Processing Disorder for Kids 9-12 : Health & Household](https://www.amazon.com/Autistic-Children-Relaxing-Processing-Disorder/dp/B0CKX6Q9Y2/ref=sr_1_2_sspa?crid=315UV5GYG36FF&dib=eyJ2IjoiMSJ9.z3FRSGs_fM39TG5yVddQfAguObXTzeDp-5aaKhJImmQlY7o6M_UHTTfM1P_b5CeDSSMuR_4oK5xIQnl-kRwV3CszU665S-pt6AG_Mm_mq7cR3cdSvaldWH4kk5K8NUzio-4MXsikpSvMP2pr_xObYrHzsgkdE1itnpsyfjzHTxBEqHRT6266l7M_cprqprlR_tpdfFVleK-wMvsySHItjc_QdwAkiyxVlNv4l1z4hAGhbYVJlT2wzuo5sYpYJHFMkI1WvFxTnCsGg4cenPzhbda46-QAeSbLauG_DkR74aY.-ylMt_PmbdDXCGmlTyC6lCjscxTzVfMuB38qcekvx3w&dib_tag=se&keywords=autism+sensory+wrap&qid=1711460532&sprefix=autism+sensory+wrap%2Caps%2C104&sr=8-2-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1), OMG!! This could be the solution. Bless you. Bless Reddit!! BOOYA. Buying now, not even looking the cost., Thank you!!, Appreciate the insight! Yes, he can communicate with sign language but when he's in an episode it's hard to get him to pay attention. He almost goes cataonic. BM's are good, we've done the full panel on allergies and all that :( THANK YOU for repsonding!!, Just bought one! But will it keep him from being able to punch himself in the head?, Right on, thank you!, tHANK YOU!, Hey, cheers! Weighted blanket gets tossed but appreciate the suggestion. We just started Abilify, but not working quite yet. Lets see! Gods hands. Just wanted to check in with the public to make sure I wasnt being super selfish with this "solution.", just got one, lets see :) Thank you!!, I hope they work!, They have button closed ones. You can close him in to his neck. Arms can go up too so that might help., I hope it works! Some stretchy stimuli may help!! :), My son had SIB when he was small. Also non-verbal and no diagnosed source of pain. But, that doesn't mean there wasn't pain. He had no way to say.
Definitely talk to the doctor to rule out gastrointestinal pain because kids with ASD are prone to that.
In the meanwhile, we used "no-no's" on my boy's arms to keep him from hurting himself...idk if they would help you. We would put a long sleeved shirt over them (had to go up a few sizes because these things are bulky) so he couldn't take them off with his teeth. [Here is a link to their website.](https://www.nono-armhelper.com/?gad_source=1&gclid=Cj0KCQjwwYSwBhDcARIsAOyL0fiHiJgIZFHcYgvPARmXoWGVisgyhnSJdfcTdSkTLlAZXZu7zkWgyJcaAknuEALw_wcB), Few things :
1. Does he have some means to communicate basic needs / emotions like AAC (pictures to voice), PECS, basic ASL, anything?
2. This could be a rabbit hole but there’s a whole alternative universe of medical maladies associated with autism. I wouldn’t want you to get there coz you’ll go crazy but the bare minimum is to check for gut health (his diet) . It’s paired to regularly of bowel movements all the way to color and texture, gross but the health of his bowel movements could mean that he’s missing some nutriments that exacerbate mood swings . Typically a blood panel test is the basics to rule out deficiencies and other problems that could be offset with diet modifications and dietary supplements, and X-ray to check constipation , look for a pediatric GI doctor
3. When self - injury can’t be reduced with therapeutic interventions then a pharmacological treatment is imperative, it could take months to find the right dosage or prescription but it’s better than going years with degenerative self-injury
4. Sleep is also very important, how is his sleep?
5. Really he needs a 1:1 direct support professional at home all day long, to block and redirect self-injury . Look up your county and state developmental and intellectual disability services, if you don’t qualify seek for a waiver or a diversion crisis slot t, My son went through a time of doing this after I divorced my ex husband. It could be a trauma response to the change of having a new sibling in the house. I know it’s so scary though, and bless you for you doing all you can.
Since he seems to like being wrapped up, maybe talk to his doctor about a compression vest. Praying for you!!, Have you tried a sensory sock?, I think you’re dealing with very difficult circumstances and don’t have any perfect options. Have you ever tried squeezing his arms and legs firmly when he hits himself? It might provide some of the sensory input he’s seeking. I second the weighted blanket, too., Lots of autistic kids like deep pressure. There are several items out there to try - sensory sock, compression vests, weighted vests, weighted blankets. There are also these things that look like a plush cozy canoe that the person can sit in and feel pressure all around them. There are also sensory swings - some that are even made to hold the person in close with some pressure.
I’d also try giving him some ibuprofen or Tylenol. If for some reason he’s in pain, that might help and give you some idea what’s happening. Also make sure he’s not constipated.
All of this could be from pregnancy + newborn. It’s a very stressful time for autistic kids, with a big change in their lives. Even good changes can be hard., You are doing everything in your power to protect your kids. That isn't abuse. Have you tried a weighted blanket? What is holding you back from medication? Have you talk with someone about this?, Maybe try one of these? [Amazon.com: Sensory Body Sock for Kids, Full Body Sock Wrap for Autistic Children to Relieve Stress, Relaxing Sensory Sack for Kids Sensory Processing Disorder for Kids 9-12 : Health & Household](https://www.amazon.com/Autistic-Children-Relaxing-Processing-Disorder/dp/B0CKX6Q9Y2/ref=sr_1_2_sspa?crid=315UV5GYG36FF&dib=eyJ2IjoiMSJ9.z3FRSGs_fM39TG5yVddQfAguObXTzeDp-5aaKhJImmQlY7o6M_UHTTfM1P_b5CeDSSMuR_4oK5xIQnl-kRwV3CszU665S-pt6AG_Mm_mq7cR3cdSvaldWH4kk5K8NUzio-4MXsikpSvMP2pr_xObYrHzsgkdE1itnpsyfjzHTxBEqHRT6266l7M_cprqprlR_tpdfFVleK-wMvsySHItjc_QdwAkiyxVlNv4l1z4hAGhbYVJlT2wzuo5sYpYJHFMkI1WvFxTnCsGg4cenPzhbda46-QAeSbLauG_DkR74aY.-ylMt_PmbdDXCGmlTyC6lCjscxTzVfMuB38qcekvx3w&dib_tag=se&keywords=autism+sensory+wrap&qid=1711460532&sprefix=autism+sensory+wrap%2Caps%2C104&sr=8-2-spons&sp_csd=d2lkZ2V0TmFtZT1zcF9hdGY&psc=1), OMG!! This could be the solution. Bless you. Bless Reddit!! BOOYA. Buying now, not even looking the cost., Thank you!!, Appreciate the insight! Yes, he can communicate with sign language but when he's in an episode it's hard to get him to pay attention. He almost goes cataonic. BM's are good, we've done the full panel on allergies and all that :( THANK YOU for repsonding!!, Just bought one! But will it keep him from being able to punch himself in the head?, Right on, thank you!, tHANK YOU!, Hey, cheers! Weighted blanket gets tossed but appreciate the suggestion. We just started Abilify, but not working quite yet. Lets see! Gods hands. Just wanted to check in with the public to make sure I wasnt being super selfish with this "solution.", just got one, lets see :) Thank you!!, I hope they work!, They have button closed ones. You can close him in to his neck. Arms can go up too so that might help., I hope it works! Some stretchy stimuli may help!! :)
|
Is this just the way it is for preschool,non-verbal autistics when going to the doctor
|
Please tell me how you would react in regard to 4-year-old nonverbal autistic child at the doctors. If you had to take a child like this to the doctors then you know it's by no means a walk in the park! If your child needs something done like shots or such as in our case something painful like lansing a very infected,sore fingertip and you can't coax the child to cooperate by telling them things such as they will get a reward (or any usual means that people use with non-autistic children) then what is the commonly used standard procedure? Have you been through something like this? How did your doctor approach and treat your child? Do they just basically treat them like cattle and do what they've got to do with no regards to trauma or the pain the child is feeling? When I went with my sister and 4-year-old nonverbal autistic nephew to doctors for second day of treatment of very infected finger 6 members of medical staff entered the room and when my nephew saw them he began to sob and tremble in fear. Something I have never seen him exhibit. I have never seen him cry in this manner or show signs of fear toward anything. He doesn't generally seem to have any kind of fear or sorrow in situations where nonverbal children would be sad or scared. He laughs and definitely loves being hugged and kissed but never cries in a sad way or shows hurt feelings. He definitely gets angry and frustrated but never fear. When I saw him look at all those medical people standing there staring at him and he began to hysterically sob and tremble my heart broke into a million pieces and I can't tell you how that made me feel wanting to protect him! They said to pull his pants down and hold him down on the table so they could give him two shots one in each thigh. I said "can't my sister just pick him up and hold him with his head on her shoulder and then can't you just give him the shots in both thighs while she is holding him because then he won't cry or be scared?" They said no just lay him down and hold him firmly. At this point tears are streaming down his face and his whole body is shaking with fear. My sister obeyed and sat him on the table and they all put hands on him and held him down and pulled his pants off and I put my hands on either side of his face and started kissing his forehead and he was sweating profusely. He went from walking in their calmly to this sweating trembling hysterical crying in a matter of a few seconds. They had also said that the shots would be a bit painful and also leave his muscles in his legs sore. They were huge shots with huge needle gauge. They did the shots quickly and then the doctor casually reached over and grabbed his sore finger and squeezed it very hard to see if any pus came out because he had rancid the day before and was checking to see if it was still producing pus. When he grabbed the finger and squeezed casually my nephew's eyes widened in response to the intense pain. The second they were done I scooped him up and ran out the door leaving my sister there to talk to them or whatever. I felt infuriating rage at this! I would not allow my dog to be treated this way! Is this just how they treat autistic nonverbal children? Is this common? Everything in me screams it's not right to traumatize anyone like this with such a cold show of disconcern for their emotional state of being. He's not my son not my child but if he were that would not have taken place like that! Please tell me all your experiences in anything similar and how you feel and what you did.... Thank you very much for reading and any comments or advice.
|
As my dad would say "Life is hard, and then you die."
There is no way to verbally reason with a 4 year old level 3 autistic child. No amount of calming sounds or darkened rooms. He needed those shots, and finger taken care of or heaven forbid he could have lost it, or gotten blood poisoning.
Putting him to sleep for a procedure like that would be very dangerous, to the point of death, if it was surgery of course, but not a standard invasive procedure.
It is ok to feel terrible for him, and do your best to make his day better afterwards. But like giving medicine, some times you just have to buckle down and hold him still and squirt it down his throat., It sucks but for some things . . .we just have to make them happen. No amount of coaxing will make him cooperate or understand. So, we all get a little bit traumatized. Parents, patient and caregivers too.
I can see why they didn't want him in your sister's lap for the shots - what if he moved and the accidentally stabbed her with the needle?, Yeah it's hard, but when you go to a doctor or dentist, you do what has to be done and get it over with quickly. Sometimes that means we hold them down. My son is only 3.5, but when we got his flu shot, yes, we just held him. My husband bear hugged him, I sat in front of him holding his hand and rubbing his palm with my finger to try and keep him calm, and we just kept repeating what we'd been saying for days: "It's a quick poke and it will be over". He was scared, he cried, but the second it was over, I had a brand new helicopter toy in my backpack ready to go, so I quickly pulled it out. He was over it that fast. Then we took him to a toy store and let him pick out another toy. We always reward shitty things like doctors and dentists with toys or something special afterwards.
But the most important thing is to KEEP CALM. He will pick up on that. As the Aunt (or Uncle), you gotta keep your emotions under control and be a calming presence for him. He's looking to you and Mom for support, and if you are in tears or in a panic, he's going to be more panicked than if you were calm. He has to get these shots, he has to get the finger looked at, so be calm for him and then do something special/rewarding right after and praise him for doing awesome and being so brave., I'm in the uk and ime they follow the parents lead
I personally prefer to get it over and.fone with as quickly as possible as that's what's kindest for my son. He doesn't understand or speak and usual methods of gaining compliance won't work with him. I am the main one who holds him and comforts him when he needs medical procedures though it does take 3-4 adults to get for example an iv, injection or inhaler into him
Their approach was harsh and triggering imo they should have let you day what would work best for your child, I’m a physician and parent to an autistic child. When I have to do minor procedures on children with developmental disabilities, I usually do let parents hold the child, with proper instruction on how to stabilize the specific area. If I think it will be too traumatic in the office, I arrange sedation or send to the emergency room for light sedation if it is more urgent (it isn’t just “putting to sleep” or not, there’s a range of options). I worry that just holding children down who have difficulty understanding what is happening will cause medical trauma and make it even more challenging to test them in the future, so I really try to minimize the use of that approach. I generally recommend that my patients get a pediatrician closely affiliated with our children‘a hospital, as these doctors are more likely to have experience dealing with children with medical trauma, complex medical histories and developmental delays. Social stories about what will happen when visiting the doctor have helped my son, though this sounds like an acute situation so that may not have been possible for you. I’m so sorry this was so traumatic for your little one!, [deleted], I’d rather have a child with a minor complex with needles and doctors than a DEAD child., Finding a good doctor is hard. When I took my daughter to a new doctor she was terrified of the examination table because she associated it with pain. She wore a 3T size clothes at 5, so very small. The doctor was 6’6”. She threw a fit and laid down on the floor crying. He laid down next to her and gently patted her hand and checked her out right there. I can still see this tall, scrawny dude laying next to my tiny daughter. He was always so patient with her.
Never let a nurse, doctor or anyone touch your child without explaining what they would be doing. It hurts my heart to hurt my daughter for her own good, but gentleness even with shots and such should always be expected. Some people believe that it is best to act fast before the child can react. I disagree. That breaks trust between the child and care giver, and the parent is often seen as having been in on it too. Tell the doctor what you expect from him. You are paying for a service and you do get to make the rules., With big needles, it's also possible the injections were given into the bone - which is rare unless theres an emergency (like sepsis), but definitely something where you don't want to risk the kid jiggling and the shot piercing a nerve.
They mightve been able to handle this better- but infections can be deadly, and that's going to suck even more. This amount of doctors might be because they thought he would be difficult to handle, but it's also possible his infection was worse than OP assumed and they were worried they'd need to do an emergency procedure if the less invasive treatment didn't work., This is very true it’s hard to watch but what would be worse is not getting your kid medical care. I don’t have an NT child but I assume they would be very resistant of shots and infected finger squeezed and have to held down the same way. It’s true I’m a level 3 autistic parent and there is no reasoning with my son on small things much less this., I mean i'll be the first one to want our kids to be treated with compassions. You have to be real though, life is traumatic. We currently have a backlog of thousands of surgery and doctors appt's due to covid. Doctors DO NOT have time to take the time to sit with the patient. If we are going to be completely honest, even if they did spend that time, it wouldn't change the trauma once the needles come out ., Well of course when you put it like that but the contrast isn't that drastic. It doesn't have to be a choice of traumatized or dead. Things could be carried out with some amount of sensitivity. There was not one other soul in this clinic. One car in the parking lot. This is a very small town and in office visit isn't that pressured for time like it is in more populated areas so time is no excuse in this case, I agree 100%. Not ever good to traumatize a child like that. That is like helping them in one way and hurting in another.
|
I’m at a loss… teen bed wetting
|
Hello everyone, this is my first time posting on Reddit, please be gentle.
So my (47m) son (16m) is wetting the bed. He was diagnosed with ASD last fall and I don’t know what to do.
When he stays with his mother, he supposedly does not have accidents there, but at my house, he not only has accidents, but lies about it, doesn’t shower in the morning, then sleeps in it.
At least he’s not keeping it in bottles anymore.
I just don’t know what to do anymore! Maybe it’s me?
Any suggestions would be greatly appreciated!
|
Maybe staying over at your house is causing him stress… it suck’s but maybe he should spend the night with his mom and the day with you? Again, it sucks but you want to put his well being before anything…, If he has any constipation issues that could cause it. And it would likely be sporadic. Also might be good to check in with his doctor since this seems to have become an issue post seizure.
If it continues you could ask his doctor about medication that can be used to prevent overnight incontinence. We had great success with that and my girl did outgrow it over time., i’m 25 with a 4 yo so i don’t have much experience yet, but i used to wet the bed until i was like 8 or 9. is he a deep sleeper? my mom used to put one of those plastic-ish mattress covers on. also could try to limit liquids in the evening, though it might be harder since he’s a teen, Does he wet the bed since he was little, or was there a period where it stopped? If he hasn't been before and medical problems have been ruled out, I'd at least consider the possibility of abuse. It's not the only cause of this, something like depression or being really tired would make sense as well, but it's something to investigate., Could it have to do with him not wanting to go to the bathroom in your house at night? Maybe it’s not close to his room? Dark hallway?
You mention that he used to keep it in bottles. Would he use a urinal if he had one available?
Editing to ask if his med schedule is any different at your house than it is at mom’s?, Is it just you and your son at your house? Or who else lives there?, Would insurance cover a mattress bed wetting alarm? I know they can be pricey.
I saw you mentioned seizures. I’m not sure what your coparenting situation is like so I may be projecting based on what I experience with my stepson who is autistic…but if seizures are the cause of nighttime bed wetting then it’s not likely to exclusively be happening in one household. Maybe more frequent, but not exclusively.
My stepson is going on 7 so I get the grossness of not realizing you shouldn’t just lay in your pee. Only thing that broke the night time accidents were us setting an alarm and making him try to go every few hours in the middle of the night. It was exhausting. But I think it finally broke the habit because he didn’t like that routine either. We did that in combination with no liquids an hour before bed. He finally kicked the habit about 6 months ago. It took about 3 months total on our split placement schedule to kick the habit.
Good luck. Sending you good energy, you’re not alone., Is your house cold? My son wets the bed, has had seizures. I do find he wets the bed now more than he used to but I don't think that he's having seizures in his sleep. I don't really have any answers. Sometimes he definitely does it because he just doesn't want to get out of bed but other times I'm sure it's not a choice.
As far as him lying about it....I dunno get a cover of you don't already have one. Try not to get upset if he does do it because that would encourage him to lie. , Does he have any trauma in the bathroom? Maybe he's unfamiliar with the house because it's not as frequent as his mother's. I'm embarrassed to say when I was a teen I peed in empty milk jugs at night for weeks, because we moved to a new house and I wasn't convinced it wasn't haunted. Maybe he needs to stay there for an extended time to stay there or something, Try hospital mattress pads. Get 5 of them. They go on top of the sheets. Easy to take off and change. Tell him that he has to shower it off. He’s going to be the stinky kid., Would it be an option to wake him gently a few hours after he sleeps? We used to do that with our kids, He is a deep sleeper, and I really don’t care that he wets the bed. My major concern is the hygiene after and why does he only do it at my house?, He has stopped for a while, but he had a grandmal seizure a year ago last February. He’s on medication for it as well as ADHD and depression. He is also on growth hormones. I don’t think it’s abuse from his moms house or mine, but I have not ruled out online/xbox stuff, Maybe check him when he wakes up. And just say, oh you must have been in a deep sleep! That’s okay, let’s change the sheets together. Maybe avoid too many fluids before bed.
I had a sleepover with my friends at like 17 and I peed and it was so bizarre I never wet the bed like ever as a kid but it’s because I drank a shit ton of pop before bed., Wetting the bed is a common sign of seizure in sleep. He may be having breakthrough seizures. Talk to his neurologist., Could the medications be causing incontinence? Also, is he peeing a ton throughout the day (symptom of diabetes)?, Breakthrough seizures and also some meds knock me out so hard that I can’t wake up. Definitely talk to the doctor. But in the mornings just keep talking though the hygiene and offer an option of him changing the sheets and showering and you don’t have to discuss it (he could be embarrassed) or he tells you and you do the sheets, Maybe staying over at your house is causing him stress… it suck’s but maybe he should spend the night with his mom and the day with you? Again, it sucks but you want to put his well being before anything…, If he has any constipation issues that could cause it. And it would likely be sporadic. Also might be good to check in with his doctor since this seems to have become an issue post seizure.
If it continues you could ask his doctor about medication that can be used to prevent overnight incontinence. We had great success with that and my girl did outgrow it over time., i’m 25 with a 4 yo so i don’t have much experience yet, but i used to wet the bed until i was like 8 or 9. is he a deep sleeper? my mom used to put one of those plastic-ish mattress covers on. also could try to limit liquids in the evening, though it might be harder since he’s a teen, Does he wet the bed since he was little, or was there a period where it stopped? If he hasn't been before and medical problems have been ruled out, I'd at least consider the possibility of abuse. It's not the only cause of this, something like depression or being really tired would make sense as well, but it's something to investigate., Could it have to do with him not wanting to go to the bathroom in your house at night? Maybe it’s not close to his room? Dark hallway?
You mention that he used to keep it in bottles. Would he use a urinal if he had one available?
Editing to ask if his med schedule is any different at your house than it is at mom’s?, Is it just you and your son at your house? Or who else lives there?, Would insurance cover a mattress bed wetting alarm? I know they can be pricey.
I saw you mentioned seizures. I’m not sure what your coparenting situation is like so I may be projecting based on what I experience with my stepson who is autistic…but if seizures are the cause of nighttime bed wetting then it’s not likely to exclusively be happening in one household. Maybe more frequent, but not exclusively.
My stepson is going on 7 so I get the grossness of not realizing you shouldn’t just lay in your pee. Only thing that broke the night time accidents were us setting an alarm and making him try to go every few hours in the middle of the night. It was exhausting. But I think it finally broke the habit because he didn’t like that routine either. We did that in combination with no liquids an hour before bed. He finally kicked the habit about 6 months ago. It took about 3 months total on our split placement schedule to kick the habit.
Good luck. Sending you good energy, you’re not alone., Is your house cold? My son wets the bed, has had seizures. I do find he wets the bed now more than he used to but I don't think that he's having seizures in his sleep. I don't really have any answers. Sometimes he definitely does it because he just doesn't want to get out of bed but other times I'm sure it's not a choice.
As far as him lying about it....I dunno get a cover of you don't already have one. Try not to get upset if he does do it because that would encourage him to lie. , Does he have any trauma in the bathroom? Maybe he's unfamiliar with the house because it's not as frequent as his mother's. I'm embarrassed to say when I was a teen I peed in empty milk jugs at night for weeks, because we moved to a new house and I wasn't convinced it wasn't haunted. Maybe he needs to stay there for an extended time to stay there or something, Try hospital mattress pads. Get 5 of them. They go on top of the sheets. Easy to take off and change. Tell him that he has to shower it off. He’s going to be the stinky kid., Would it be an option to wake him gently a few hours after he sleeps? We used to do that with our kids, He is a deep sleeper, and I really don’t care that he wets the bed. My major concern is the hygiene after and why does he only do it at my house?, He has stopped for a while, but he had a grandmal seizure a year ago last February. He’s on medication for it as well as ADHD and depression. He is also on growth hormones. I don’t think it’s abuse from his moms house or mine, but I have not ruled out online/xbox stuff, Maybe check him when he wakes up. And just say, oh you must have been in a deep sleep! That’s okay, let’s change the sheets together. Maybe avoid too many fluids before bed.
I had a sleepover with my friends at like 17 and I peed and it was so bizarre I never wet the bed like ever as a kid but it’s because I drank a shit ton of pop before bed., Wetting the bed is a common sign of seizure in sleep. He may be having breakthrough seizures. Talk to his neurologist., Could the medications be causing incontinence? Also, is he peeing a ton throughout the day (symptom of diabetes)?, Breakthrough seizures and also some meds knock me out so hard that I can’t wake up. Definitely talk to the doctor. But in the mornings just keep talking though the hygiene and offer an option of him changing the sheets and showering and you don’t have to discuss it (he could be embarrassed) or he tells you and you do the sheets, Maybe staying over at your house is causing him stress… it suck’s but maybe he should spend the night with his mom and the day with you? Again, it sucks but you want to put his well being before anything…, If he has any constipation issues that could cause it. And it would likely be sporadic. Also might be good to check in with his doctor since this seems to have become an issue post seizure.
If it continues you could ask his doctor about medication that can be used to prevent overnight incontinence. We had great success with that and my girl did outgrow it over time., i’m 25 with a 4 yo so i don’t have much experience yet, but i used to wet the bed until i was like 8 or 9. is he a deep sleeper? my mom used to put one of those plastic-ish mattress covers on. also could try to limit liquids in the evening, though it might be harder since he’s a teen, Does he wet the bed since he was little, or was there a period where it stopped? If he hasn't been before and medical problems have been ruled out, I'd at least consider the possibility of abuse. It's not the only cause of this, something like depression or being really tired would make sense as well, but it's something to investigate., Could it have to do with him not wanting to go to the bathroom in your house at night? Maybe it’s not close to his room? Dark hallway?
You mention that he used to keep it in bottles. Would he use a urinal if he had one available?
Editing to ask if his med schedule is any different at your house than it is at mom’s?, Is it just you and your son at your house? Or who else lives there?, Would insurance cover a mattress bed wetting alarm? I know they can be pricey.
I saw you mentioned seizures. I’m not sure what your coparenting situation is like so I may be projecting based on what I experience with my stepson who is autistic…but if seizures are the cause of nighttime bed wetting then it’s not likely to exclusively be happening in one household. Maybe more frequent, but not exclusively.
My stepson is going on 7 so I get the grossness of not realizing you shouldn’t just lay in your pee. Only thing that broke the night time accidents were us setting an alarm and making him try to go every few hours in the middle of the night. It was exhausting. But I think it finally broke the habit because he didn’t like that routine either. We did that in combination with no liquids an hour before bed. He finally kicked the habit about 6 months ago. It took about 3 months total on our split placement schedule to kick the habit.
Good luck. Sending you good energy, you’re not alone., Is your house cold? My son wets the bed, has had seizures. I do find he wets the bed now more than he used to but I don't think that he's having seizures in his sleep. I don't really have any answers. Sometimes he definitely does it because he just doesn't want to get out of bed but other times I'm sure it's not a choice.
As far as him lying about it....I dunno get a cover of you don't already have one. Try not to get upset if he does do it because that would encourage him to lie. , Does he have any trauma in the bathroom? Maybe he's unfamiliar with the house because it's not as frequent as his mother's. I'm embarrassed to say when I was a teen I peed in empty milk jugs at night for weeks, because we moved to a new house and I wasn't convinced it wasn't haunted. Maybe he needs to stay there for an extended time to stay there or something, Try hospital mattress pads. Get 5 of them. They go on top of the sheets. Easy to take off and change. Tell him that he has to shower it off. He’s going to be the stinky kid., Would it be an option to wake him gently a few hours after he sleeps? We used to do that with our kids, He is a deep sleeper, and I really don’t care that he wets the bed. My major concern is the hygiene after and why does he only do it at my house?, He has stopped for a while, but he had a grandmal seizure a year ago last February. He’s on medication for it as well as ADHD and depression. He is also on growth hormones. I don’t think it’s abuse from his moms house or mine, but I have not ruled out online/xbox stuff, Maybe check him when he wakes up. And just say, oh you must have been in a deep sleep! That’s okay, let’s change the sheets together. Maybe avoid too many fluids before bed.
I had a sleepover with my friends at like 17 and I peed and it was so bizarre I never wet the bed like ever as a kid but it’s because I drank a shit ton of pop before bed., Wetting the bed is a common sign of seizure in sleep. He may be having breakthrough seizures. Talk to his neurologist., Could the medications be causing incontinence? Also, is he peeing a ton throughout the day (symptom of diabetes)?, Breakthrough seizures and also some meds knock me out so hard that I can’t wake up. Definitely talk to the doctor. But in the mornings just keep talking though the hygiene and offer an option of him changing the sheets and showering and you don’t have to discuss it (he could be embarrassed) or he tells you and you do the sheets, Maybe staying over at your house is causing him stress… it suck’s but maybe he should spend the night with his mom and the day with you? Again, it sucks but you want to put his well being before anything…, If he has any constipation issues that could cause it. And it would likely be sporadic. Also might be good to check in with his doctor since this seems to have become an issue post seizure.
If it continues you could ask his doctor about medication that can be used to prevent overnight incontinence. We had great success with that and my girl did outgrow it over time., i’m 25 with a 4 yo so i don’t have much experience yet, but i used to wet the bed until i was like 8 or 9. is he a deep sleeper? my mom used to put one of those plastic-ish mattress covers on. also could try to limit liquids in the evening, though it might be harder since he’s a teen, Does he wet the bed since he was little, or was there a period where it stopped? If he hasn't been before and medical problems have been ruled out, I'd at least consider the possibility of abuse. It's not the only cause of this, something like depression or being really tired would make sense as well, but it's something to investigate., Could it have to do with him not wanting to go to the bathroom in your house at night? Maybe it’s not close to his room? Dark hallway?
You mention that he used to keep it in bottles. Would he use a urinal if he had one available?
Editing to ask if his med schedule is any different at your house than it is at mom’s?, Is it just you and your son at your house? Or who else lives there?, Would insurance cover a mattress bed wetting alarm? I know they can be pricey.
I saw you mentioned seizures. I’m not sure what your coparenting situation is like so I may be projecting based on what I experience with my stepson who is autistic…but if seizures are the cause of nighttime bed wetting then it’s not likely to exclusively be happening in one household. Maybe more frequent, but not exclusively.
My stepson is going on 7 so I get the grossness of not realizing you shouldn’t just lay in your pee. Only thing that broke the night time accidents were us setting an alarm and making him try to go every few hours in the middle of the night. It was exhausting. But I think it finally broke the habit because he didn’t like that routine either. We did that in combination with no liquids an hour before bed. He finally kicked the habit about 6 months ago. It took about 3 months total on our split placement schedule to kick the habit.
Good luck. Sending you good energy, you’re not alone., Is your house cold? My son wets the bed, has had seizures. I do find he wets the bed now more than he used to but I don't think that he's having seizures in his sleep. I don't really have any answers. Sometimes he definitely does it because he just doesn't want to get out of bed but other times I'm sure it's not a choice.
As far as him lying about it....I dunno get a cover of you don't already have one. Try not to get upset if he does do it because that would encourage him to lie. , Does he have any trauma in the bathroom? Maybe he's unfamiliar with the house because it's not as frequent as his mother's. I'm embarrassed to say when I was a teen I peed in empty milk jugs at night for weeks, because we moved to a new house and I wasn't convinced it wasn't haunted. Maybe he needs to stay there for an extended time to stay there or something, Try hospital mattress pads. Get 5 of them. They go on top of the sheets. Easy to take off and change. Tell him that he has to shower it off. He’s going to be the stinky kid., Would it be an option to wake him gently a few hours after he sleeps? We used to do that with our kids, He is a deep sleeper, and I really don’t care that he wets the bed. My major concern is the hygiene after and why does he only do it at my house?, He has stopped for a while, but he had a grandmal seizure a year ago last February. He’s on medication for it as well as ADHD and depression. He is also on growth hormones. I don’t think it’s abuse from his moms house or mine, but I have not ruled out online/xbox stuff, Maybe check him when he wakes up. And just say, oh you must have been in a deep sleep! That’s okay, let’s change the sheets together. Maybe avoid too many fluids before bed.
I had a sleepover with my friends at like 17 and I peed and it was so bizarre I never wet the bed like ever as a kid but it’s because I drank a shit ton of pop before bed., Wetting the bed is a common sign of seizure in sleep. He may be having breakthrough seizures. Talk to his neurologist., Could the medications be causing incontinence? Also, is he peeing a ton throughout the day (symptom of diabetes)?, Breakthrough seizures and also some meds knock me out so hard that I can’t wake up. Definitely talk to the doctor. But in the mornings just keep talking though the hygiene and offer an option of him changing the sheets and showering and you don’t have to discuss it (he could be embarrassed) or he tells you and you do the sheets
|
I’m at my wits end :(
|
I don’t even know where to start but I’ll start here: my child is 6. He is diagnosed autistic and I believe he also has ADHD possibly. He is mostly verbal with lots of echolalia.
Lately he hasn’t been sleeping much or really at all. Two nights ago he was up at 2 am after going to bed at 9. He never went back to sleep. Then the next morning he was up at 5 and this morning he was up at 4, after going to bed at 10. Hasn’t gone back to sleep. This would be fine if he would actually be quiet and be on his own but he cannot be. If he is awake everyone in the house has to be as well.
He had a sleep study done, and had his tonsils removed 2 years ago. This helped for maybe a month and then he was back to being awake at all hours of the night. He takes melatonin to go to bed per his pediatrician/sleep Dr. but he does not stay asleep. (I have also tried magnesium spray etc)
He goes to sleep in his own bed but he does not stay in his bed and freaks out (screaming/crying) if no one is near him when he wakes up.
I’m currently 38 weeks pregnant and honestly I’m exhausted. Me and my husband are both exhausted- as we have another 1 y.o. boy.
When my 6 y.o. doesn’t sleep he’s been so whiny and lately been more aggressive. I was clawed and scratched at yesterday by him because I was playing with his playdoh. His face when he was clawing at me was honestly terrifying as I’ve never seen it like that before. He honestly just looked like he wanted to hurt me. I’m scared for when he is older as he is already a big kid, I know he is going to be much bigger than me and I won’t be able to “take” him. He pushes and runs into people already and hits as more of an affection thing but he doesn’t understand that he is being rough and it hurts when he hits.
I have no idea where to even turn to because when I tell my mom (his grandma) I’m done and don’t even know what to do with him anymore she just stares at me blankly. I get it, not everyone understands but I just need advice on what to “do with him.”
|
Clonidine. Clonidine. Clonidine. It’s the only thing that keeps our kid asleep all night. Once he started sleeping all night, his behavior got wayyyyyy better, Have you tried Trazadone?, In addition to the medication recs, maybe look at how much physical activity he gets during the day. We find running/walking in the afternoon leads to better sleep. We've also been working on getting kiddo to be awake and alone in her room after she's soothed from waking up. Lots of talking before bed and at night. Maybe a social story will help reinforce too., Forgot to mention, he had been on that previously! Only 1mg and it did not keep him asleep all night! How many mg are yours on?, I haven’t! Is it for sleep?, Trazadone can give some wild dreams, He takes 1.5 pills (which are .1mg each), Our middle takes clonadine as well and it's really helped her. Her doctor says she can take up to two of the .1mg- one before bed and one upon night waking. We don't do the second one because she goes back to sleep fairly easily if allowed into our bed which I'm fine with., Oh yes! It’s a safe sleep medication. My son has used it for years. I don’t think he slept through the night until he was 12 when I started Trazadone. Like your child, he used to be up all hours of the night., I’ll definitely talk to his doctor to try it. Thanks so much!, Research this one imho. I tried it myself and won't use it anymore.
Our Aspie kid uses melatonin to modest benefit. Myself an aspie adult with sleep maintenance issues, I use doxepin. Mild, easy to stop, safe in the long term. When he's older, I'll talk to his doctor about it., Clonidine. Clonidine. Clonidine. It’s the only thing that keeps our kid asleep all night. Once he started sleeping all night, his behavior got wayyyyyy better, Have you tried Trazadone?, In addition to the medication recs, maybe look at how much physical activity he gets during the day. We find running/walking in the afternoon leads to better sleep. We've also been working on getting kiddo to be awake and alone in her room after she's soothed from waking up. Lots of talking before bed and at night. Maybe a social story will help reinforce too., Forgot to mention, he had been on that previously! Only 1mg and it did not keep him asleep all night! How many mg are yours on?, I haven’t! Is it for sleep?, Trazadone can give some wild dreams, He takes 1.5 pills (which are .1mg each), Our middle takes clonadine as well and it's really helped her. Her doctor says she can take up to two of the .1mg- one before bed and one upon night waking. We don't do the second one because she goes back to sleep fairly easily if allowed into our bed which I'm fine with., Oh yes! It’s a safe sleep medication. My son has used it for years. I don’t think he slept through the night until he was 12 when I started Trazadone. Like your child, he used to be up all hours of the night., I’ll definitely talk to his doctor to try it. Thanks so much!, Research this one imho. I tried it myself and won't use it anymore.
Our Aspie kid uses melatonin to modest benefit. Myself an aspie adult with sleep maintenance issues, I use doxepin. Mild, easy to stop, safe in the long term. When he's older, I'll talk to his doctor about it., Clonidine. Clonidine. Clonidine. It’s the only thing that keeps our kid asleep all night. Once he started sleeping all night, his behavior got wayyyyyy better, Have you tried Trazadone?, In addition to the medication recs, maybe look at how much physical activity he gets during the day. We find running/walking in the afternoon leads to better sleep. We've also been working on getting kiddo to be awake and alone in her room after she's soothed from waking up. Lots of talking before bed and at night. Maybe a social story will help reinforce too., Forgot to mention, he had been on that previously! Only 1mg and it did not keep him asleep all night! How many mg are yours on?, I haven’t! Is it for sleep?, Trazadone can give some wild dreams, He takes 1.5 pills (which are .1mg each), Our middle takes clonadine as well and it's really helped her. Her doctor says she can take up to two of the .1mg- one before bed and one upon night waking. We don't do the second one because she goes back to sleep fairly easily if allowed into our bed which I'm fine with., Oh yes! It’s a safe sleep medication. My son has used it for years. I don’t think he slept through the night until he was 12 when I started Trazadone. Like your child, he used to be up all hours of the night., I’ll definitely talk to his doctor to try it. Thanks so much!, Research this one imho. I tried it myself and won't use it anymore.
Our Aspie kid uses melatonin to modest benefit. Myself an aspie adult with sleep maintenance issues, I use doxepin. Mild, easy to stop, safe in the long term. When he's older, I'll talk to his doctor about it., Clonidine. Clonidine. Clonidine. It’s the only thing that keeps our kid asleep all night. Once he started sleeping all night, his behavior got wayyyyyy better, Have you tried Trazadone?, In addition to the medication recs, maybe look at how much physical activity he gets during the day. We find running/walking in the afternoon leads to better sleep. We've also been working on getting kiddo to be awake and alone in her room after she's soothed from waking up. Lots of talking before bed and at night. Maybe a social story will help reinforce too., Forgot to mention, he had been on that previously! Only 1mg and it did not keep him asleep all night! How many mg are yours on?, I haven’t! Is it for sleep?, Trazadone can give some wild dreams, He takes 1.5 pills (which are .1mg each), Our middle takes clonadine as well and it's really helped her. Her doctor says she can take up to two of the .1mg- one before bed and one upon night waking. We don't do the second one because she goes back to sleep fairly easily if allowed into our bed which I'm fine with., Oh yes! It’s a safe sleep medication. My son has used it for years. I don’t think he slept through the night until he was 12 when I started Trazadone. Like your child, he used to be up all hours of the night., I’ll definitely talk to his doctor to try it. Thanks so much!, Research this one imho. I tried it myself and won't use it anymore.
Our Aspie kid uses melatonin to modest benefit. Myself an aspie adult with sleep maintenance issues, I use doxepin. Mild, easy to stop, safe in the long term. When he's older, I'll talk to his doctor about it.
|
I’m fucking breaking
|
My son will be 3 in 4 days and nothing has gotten easier. He is nonverbal and his receptive language is not great. Everything triggers a full blown meltdown. For his upcoming birthday, we took him to a special park that was built and designed for disabled kids. There are little cars to drive, fun rides, a sensory play area and so much more. He screamed and threw a tantrum at every turn. You’d think we were torturing him? But it’s the same anywhere, with everything. I bend over backwards daily to accommodate him. His little brother, who is 8 months old, regularly gets put on the back burner because my eldest demands SO much from me. But it’s never enough. I know being a parent is a thankless job, but FUCK. One of my old friends shared a video of her teaching her 2 year old son how to put a golf ball. The little boy loved it. The tiny act of her being able to teach her son something and him not scream and erupt had me in awe. And to top it off, the little boy then actually imitated the action all on his own afterwards and it just fucking broke me. I have never had those moments with my son. My son hardly even cares to interact with me most of the time, unless he’s asking me to get something for him. I just feel so empty. I feel so fucking burnt out and alone. My husband and I have made our children the center of our worlds. There’s nothing we wouldn’t do for either of our boys, but holy shit I’m tired. Sometimes I feel like my toddler doesn’t even like me. Like he wouldn’t even notice if I just disappeared. I don’t know what my point is, I’m just not fucking okay. I’m not. Someone tell me this is not going to last forever??
Also, I should add that my son attends ABA therapy full-time and has been receiving ECI services for a year.
|
I have so much empathy for where you are at.
My kid is nearly 4 and school has made a big difference., Hang in there, it may get better. 3-5 years old was a ROUGH age for our daughter. She had reached a point of basically screaming and SIB at all waking hours. We were desperate and had no access to ABA which we figured out was our one hope for any improvement and had to move across the country to gain access to it. A year later she is 6 years old now and its gotten a lot better. We still deal with bad days with dysregulation but its so so much better. Right now while I'm writing she just ate and is peacefully coloring in her trolls coloring book. Just that simple statement was not possible a year ago., Lower your expectations.
Okay good.
Now lower them some more.
Nope, that's way to high. Lower it some more.
I love ABA (and don't stop) additionally try YouTube Floortime.
Basically, just sit w/ your kid, (on the floor, hence the name) in silence and observe him. Try tiny steps of bonding. Every touch of the hand is a win. Every second of not tantruming is a win.
Remember, every "request" might seem like no big deal to most, but it's huge to your kid.
Can he be picked up and not cry? That's a win.
Going outside the house, just steps out in front of the door, if that was successful, celebrate it!!
He threw food you offered, no biggie. It can be picked up.
The hustle and bustle of life is really hard for our little ones. We just have to meet them where they are.
Finally and most importantly, you can't pour from an empty cup.
Cry. Pray. Rejuvenate. Reframe. Therapy and yoga is so good for us parents.
Good luck mom, What we have learned is the terrible twos are delayed and or extended. Basically because of all the processing problems our children behave much younger than their biological age. A year is a huge difference between a two year old and a one year old.
I think a big place like that sounds like it’s for older kids on the spectrum. I think sometimes people limit their understanding of autism to only high functioning high intelligence autistic children which is the minority of autistic children. It sometimes means play places for “young autistic children” aren’t really geared low enough even for moderately young autistic children.
It’s hard dealing with toddlers, eventually you start finding the few places that do work. The activities that are acceptable., I found that comparing my kids to other kids always left me feeling down, and one of my kids is NT and hit all his milestones on time. No matter what, there’s always some other kid somewhere doing something that makes your kid seem “wrong.” And it’s magnified when you compare a ND kid to a typically developing one. I still feel like that now sometimes and they’re teenagers! I genuinely think part of early parenthood is learning to live with the kids you have, not the kids you thought you might have.
Example: I’m a goddamned librarian and I can’t get either of my kids to like reading. I’m a much happier person since I gave that up. I let them show me what THEY like, and we’re all better for it., [deleted], I can relate. 2.5 to 3.5 was such a hard year for us too. I felt like you’re feeling often! We barely went anywhere that year. But from 3.5 to 4.5, our son has gotten so much better. It’s still very hard, particularly going to new places.
Having said that, I can’t stress enough, you just can’t compare your kid to other kids. It’s counterproductive and it’ll wreck your mental health. Just embrace every little victory and try your best to understand and focus on what brings your son joy.
Also, try a tablet. It really did help us out when our son was 3. Our kid picked up so much language from it and I think he enjoyed the “accomplishments.” Absolutely set boundaries obviously., My youngest is 4 and doesn’t speak. He use to have barely any receptive language but in the past 6 months it has really come along. Today he learnt how to climb ladders at the park and it made me very very happy. Keep on plodding along!, I see you mama. I am struggling with the same… cry it out if you need to. Seasons don’t last forever.,
I will copy and paste a post I made on here about a year ago. I feel your pain. My son is now approaching 5 and things are have gotten so much easier. Things drastically improved about 6 months ago. I think you're going through a which is massively difficult and feels like it will never end. It will. I'm sorry you're going through this as I know how difficult it is.
It will get easier and it won't last forever.
"I am a 39yo dad. I have 2 children. One is 8 and the other is 3. I took my 3yo son to be assessed privately. The diagnosis was autism. His speech is delayed. He does try to talk but its only words like "cat" "horse" He is hyperactive +++. We wake up to him banging his wall with his feet. It's so loud and is an awful way to wake up every morning. Once he's up he will run downstairs and turn the taps on in the sink. He will bang cupboards and bang chairs. He will run to the bathroom and put a full toilet roll down the toilet.
He never ever stops. He will rarely settle and just sit for a while. He is on the go from when he wakes up until bed. He sleeps very well which is good. He will nip me and slap. He laughs while doing this. I can't take him into shops. He has massive melt down when he has to wait in the line. I can't walk with him around the town because he just wants to run. He goes mad sometimes when the car stops.
I take him out all the time for long walks in the country side. I enjoy the walks and so does he. The walks never go smoothly either, there is always some melt down on the way when he trys to run away from me. I always hope it will relax him but he's still full on once we get home. My other son isn't getting as much attention because of how full on the 3yo is.
I am a very active father and I do everything for my kids. We can't do anything as a family because of my 3yo. We can't for a meal, we can't go on days out to places like parks, we can't go to busy beaches on a sunny day. Nothing relatively normal. We both work. We both try our very best but its not working. It's now causing me and partner to argue with each other. Its all down to our 3yo son though.
I feel like I am at my wits end and I feel like I have coped better than most until now. This is no life at all. I get jealous looking at people who's children just follow them up the road, can talk and just do normal things. I feel like I'm losing my mind.
I love my kids more than anything but this is driving me crazy. I am not a depressed person.
Does this get easier? ", Yeah age 2 to 4 was tough for us too. You're still coming to terms with the reality of the situation as well as getting used to the rigid behaviour, frustrations over communication, and dealing with the meltdowns.
I wanted to be the best mum in the world and give my son everything, but I forced too many overwhelming experiences on him.
Things got better when I stopped. He'd have been about 3.5 and I went cold turkey after a horrible day at a theme park. I stopped all the playdates, toddler sessions, clubs/ activities, days out etc.
My son wanted a quieter life and we're so much happier for it. He's nearly 5 now and I've introduced two carefully selected and short after school activities that we're fairly relaxed about going to or not.
I'm much more chiiled about meltdowns too. I think of it like i'm his safe harbour and stay with him quietly until they pass.
Sending very best wishes., I remember feeling all of these things. I realized I was forcing a normal childhood on a kid who didn’t want it. I had to ask why I am doing these things forcing him to go to places NT kids love. I realized in my case I wasn’t doing it for him he hated all of those things but society tells you as a parent that being a good parent is taking your kids to experience things that NT kids love but that’s not the case for us.
It will get better 3-5 we’re the hardest years of my life. 5-6 is significantly better a breeze compared to how it was. My advice to you is stay strong. It will get better. Take it day by day. Stop the comparisons and expectations. Keep trying but have no expectations for how something will go. Go into a new situation expecting to leave if your son can’t handle it. I think where I went wrong was having huge expectations and expecting things to go great and being heartbroken when it didn’t., I know how that feels and I'm sorry to tell you it will most likely continue like that forever but you get used to it even though it will always be hard. My first one is the disabled one and like you, my second was always in his bouncer or jumper (try not to have him lying to much because my developed a flat head for this reason which I hate myself for,). He will continue, not being like other kids (but then I have come to realize that even "normal" kids are not that normal as I would think. I think as parents we created in our mind what a perfect child should be and notice that in other kids but not all are like that. What one can do the other can't. Yes my son is disabled, he has no friends, does weird things at school which hurts me but luckily he doesn't care or notice so it's just in my head. I came to realization that I don't care what others think either when he's having a tantrum. One comment I always think about and helped me that someone in a forum said was that one time a lady called the cops on this mother whose child was throwing a tantrum. Cops came the mom was getting her kid in the car and he just help sorry for her and said he has a cousin that has autism too and he'lly compassion instead. So I don't care what others think. Luckily you have another child. I have 3 in total. The young ones don't have this disability and I find what you're looking for in them. And they are also very different from each other and hard to deal with sometimes but I find strength on them. I also love my first one too and had things that other kids his age don't have and I appreciate that about him. You still find something later on when he's older that will make you proud, different and special. You just have to go through this storm now and get used to it, FELT THIS HEAVY. I had to cut off contact with friends who have kids on easy mode bc I just couldn’t take the jealousy and rage I felt whenever they would simply share regular mom stories/experiences. It was never malicious on their end, but for me it just always felt like an unintentional taunt whenever they would talk about their kids.
I’m a single mom and have been my sons entire 6 years on earth. You’re lucky to have the other parent to lean on, so if you’re burnt out, take advantage of that privilege and get your husband to take the kids for 24-72hours so you can have a much needed break for yourself. It’s not easy doing it by yourself but it’s more than manageable, shit I do it day in and day out all by myself for the last 6 years and indefinitely.
They’ll be fine while you build yourself back up. If you don’t take the time for yourself, you could do stuff that may traumatize you, your kids, your husband, or all of the above. 💯, Though it may not feel like it, you are actually doing it right. Trying to work out fun things for our children is really difficult. It’s trial and error because all the things we loved as children may not be any fun for our kids.
My kid is 7 now, and I feel like we invent new traditions/routines all the time. We learn the hard way when certain places or events are not for us, but we manage by changing parts to better accommodate our child.
Thinking about it….fourth of July we spend in a closet. On Christmas our daughter opens gifts alone under a blanket, birthdays no one is allowed to sing…I could go on - it’s endless the ways we’ve completely reinvented ‘normal’
Of course not everything changes, there is a degree of resilience they have to learn. But for those times when you want your kids to be happy, follow their lead…err meltdowns.
It gets easier., Hey OP, I feel your post so hard. You and your husband are basically us two years ago. Our oldest son just turned 5 and is nonverbal. His brother is 3 and neurotypical. Autism parenting is a tough hand to be dealt. Especially when your first born is nonverbal, it's like jumping straight into the deep end of the pool when you've never even been in water before. It feels like you're constantly struggling just to keep your head above water. And the deep sorrow and sadness you're filled with is crushing. Seeing their NT peers, or even younger kids develop much faster and do all the typical things that you desperately wish your kid would do. The constant worrying about if it's always going to be this way for the rest of their life (and yours?). The things other parents don't have to deal with- the constant screeching or screaming at the top of their lungs for reasons you don't even know. The sleepless nights while they scream bloody murder at 3am while you just hope the neighbors don't call the police. All the meltdowns that would be nipped right in the bud if you could just TALK to them. How hard it is to go out in public. Might be able to manage grocery shopping, but going to a restaurant? That's risky. The potty training difficulties. I dunno if you've had to deal with this, but most parents never have to deal with the horror of seeing your child smear poop all over themselves, the wall, the window, simply because they're curious and have no concept of it being yucky. And you have no way of communicating that either. The ripple effect it has on the rest of your life. Things other parents have no problem doing - keeping up with chores, doing regular family outings, maybe even getting a babysitter so you guys can have date nights... it makes you feel like you're a horrible parent and adult and everyone else is so much better than you. But then you realize you've got 10x the challenges, and you get nowhere near as much of the rewards - the soul nourishing affection and connection, seeing them learn and grow and talk and develop... it's a whole lot of work and very little return. Which sounds TERRIBLE but I don't think any other parent that's not in this situation would understand because you truly do love your kid more than anything in the world, and make them the center of everything you do. But it's just so... tiring.
I can't predict the future for your (or my) kid, but I will say that for us, things have gotten easier. He's still nonverbal, but he's picking up words here and there, and is getting better with initiating communication to let us know what he needs, which prevents most of the meltdowns. He's getting close to fully potty trained. He's in big boy undies and has peeing down 100%, just still working on the pooping part. He's getting more and more independent, and as we've figured out his communication, and he's started communicating a bit more, a lot of the struggles have lessened. It's still tough, don't get me wrong. But we can go to restaurants and outings, just takes a bit more planning. And as his younger brother has gotten older and started talking and doing all those amazing and cute things we've missed out on this whole time, it's really started filling our hearts a bit more, and this whole being a parent thing is feeling a whole lot more fulfilling. It's going to be a long struggle, but it will get better. If I could give any advice it would be:
- ABA therapy!! If you can, this has been the biggest help. We have our son in full time ABA during the day, M-F. This has helped him develop so much. And it has a side benefit of giving you as a parent a break. If you can get them into a therapy center, it's almost like daycare and frees you up to work or pursue other things which is huge for your mental health. Should be covered by insurance.
- consistency and strict adherence to routine
- speech therapy as well. It's only an hr a week but does seem to help.
- find one or two family members who are familiar with your kid's autism and everything else it entails to lean on for babysitting at least once a month. You gotta let yourself recharge.
- patience. For yourself, for your kid, and for your partner. Your kid doesn't want to be this way any more than you do.
- learn what they like, what they LOVE, and what they hyperfocus on. Provide them ample opportunity for the things they like, a healthy amount of the things they LOVE, and save those things they hyper focus on to be a last resort tool when you really need it. Restrict access otherwise.
- lots of positive reinforcement for good behaviors, zero attention for negative behaviors, and redirect behavior. Even negative attention can be reinforcing.
- find as many opportunities as you can to provide praise and positive reinforcement.
- pick your battles and have a lot of compassion for yourself. This shit is hard and sometimes you just can't wear yourself out any more.
Edit: just saw you mentioned your son is in ABA. That's good, just keep chugging. Progress comes in spurts. It WILL get easier, and as your other son gets older, your bucket will start to be refilled by all the things that you're currently missing out on., That sounds extremely taxing. Are you getting breaks? Are you in support groups?
Do you sign with your child? How does he communicate? Is he happy at his ABA center and do you participate in his services? 40 hours a week plus other services is an immense schedule for someone that age and I am extremely suspect of any ABA center that doesn’t fully involve parents and dont do services at home. My experience is that they are billing mills staffed by inexperienced young adults who have too many kids and zero education in ECE. They’re essentially autism preschools but they don’t actually have the training to run a great preschool. I mean; would you be happy being asked to do trials or whatever for 40 hours a week at any age? Just look at the ABA sub. I don’t sub there any more because I just can’t stand what the field has become.
I’m trained in ABA and other things and I actually found the CPS model by far the most helpful for communicating with my child and my stress levels. The book the explosive child has saved me immense battles with my almost 4 year old. She still has very intense emotions and meltdowns but far less frequent and we are able to get on track much easier.
I just suspect this little one has very little say over his schedule or desires or wants and is overwhelmed on top of challenging behaviors., from ages 2 to 5 was survival mode for us. My daughter screamed a lot, threw things, harmed herself, had meltdowns that lasted 20+ minutes, did not sleep, etc. How did we all survive it? We lowered our expectations tremendously.
As long as your kid is fed, clean and safe you are doing a great job. Fuck a clean house, fuck trying to make the perfect dinner, fuck limiting screen time, etc. It's okay if your house is messy, your kid lives on chicken nuggets and blippi and there's crayon scribbles on the wall. It's okay. These years are survival years.
Lower your expectations- prepare yourself mentally that you will probably have to leave outings and events early. Let it be a nice surprise if everything goes well.
Understand that your kid is on their own timeline, that you can't compare him to anyone else because autism works on its own time.
If you're able to, you and your husband should parent in shifts for a little while. Your husband can take them out while you sleep in, you take them while your husband gets an hour to himself. We use the phrase "can you be the default parent right now?" to let each other know when we've checked out and need help. Caregiver burn out is real. It's absolutely valid to be exhausted out of your mind right now, shit is tough. I know it, I get it, I was there right with you just a few years ago.
Also, I'm not a doctor and what worked for my kid might not work for yours, but we got my daughter on resperidone and it's really worked on mellowing her out. Her meltdowns have decreased and she has an easier time adjusting to change. It's not a miracle drug, but it has definitely made a noticeable difference in our lives., Some scream and act up when they want something but can’t communicate it. Figuring out what they want …food, repeat the last ride they were on, get on a certain ride or you might help., Well, one things for certain.. there are thousands upon thousands of us out there who fully understand. Breaking, drowning, dying.. oh yeah I’ve felt that. But… You’re doing okay. It’s gonna be okay fr. This isn’t some unlucky thing, or something you did wrong.. this is a challenge. To rise up for your kids day by day. You will find so much positive change in yourself too if you keep your chin up. It DOES GET EASIER. Toddlers are ridiculous, neurotypical or not.. and autistic kids are a little delayed or prolonged in their tantrums, but they do subside just like any kid. When my kid started school it slowly got better. He’s now 6 and I’m so just relieved at his progress. I think a lot of it is just age tbh! There are other areas that are harder right now (he constantly wants me to jump on the gd trampoline and my body is DONE jumping on that gd trampoline.. can’t wait until winter 🥶)… but overall, things are better. Your child will mature. No matter the intellectual level, in terms of easily upset tantrums and communication issues, it most likely will get better with age. Sending you some love and hugs for you and your family 💞, Idk if it will work for you but cutting out dairy milk has helped my daughter tremendously., I say this to you as a parent who is high functioning autistic raising a moderately autistic child. My boy is 9 now but at 3/4 years old.. tantrums in abundance. Everything was a fight. Eating, potty training, simple tasks, leaving anywhere.. a simple change in direction while on a walk. We couldn’t even say the word “bye” without a meltdown. He was also completely nonverbal until kindergarten. He graduated out of ABA at 5. School I think helped much more than ABA, but I’m not against the program. I think it depends on the techs the kids get.
Anyway, it’s all about taking it in stride. I know the constant tantrums and tears can be overwhelming, but think of it from his point of view. He’s a kid that just doesn’t get it. Can you imagine what it’s like to not understand your world with no way to communicate that you don’t understand? When I started thinking of it in those terms, patience came much easier to me. I found that the things that helped him most was speech therapy and school. Now he’s mostly verbal and follows directions, to an extent. He can do a lot of things on his own as well.
I wish you all of the luck!, Have you talked to your doctor about medication for him? My youngest was nonverbal and frustrated all the time until we got him medication at like four. It was enough to get him to become verbal. Once he could communicate he was a much happier child. I know there’s a certain amount of caution when it comes to medicating, as there should be, but sometimes it’s the best option., My son was in an in-facility ABA program from 2 to 4 1/2. We saw none to very little progress. At 5 he was still in diapers and didn't respond to his name. At school they kept him in a corner in a box where he wouldn't scream. Around 5 we started an at-home ABA program. That was when everything turned around. The program manager who had a BCBA did comprehensive Functional Behavioral Evaluations. She set up goals and gave techniques to work on behaviors. Data collection was done. My wife and I were involve in the therapy and were trained on how to address problematic behaviors. He was toilet trained, started talking, and became involved. Today he is living on his own and is a senior in college., My son just turned three 2 weeks ago. I am in the same situation as you. He’s also nonverbal and every little thing leads to tantrums. How do I cope with it? I just leave him alone in a safe place (like a cushioned room) until he calms down on his own. I noticed the more I look at him, the worse his tantrums are.
I really hope we get past this stage because it’s really stressful., I was in the same spot at that age. Everything just set him off. I was in a closet sobbing on the phone to my sister. It wasn't until he was almost 5 that things really started turning around for us. The first time he said "I lub oo" had me bawling all day. Because it was the first time I felt any of my work with him was paying off. Deep breaths. You can do this., I actually had that problem but found out I was over-protective.
It kept him from gaining independence by doing everything he wanted. And so he was extremely anxious doing things by himself. This made him throw trantrums for attention and at that age they cant separate good from bad attention. Unfortunately for me, I was only privy to this information when he turned 10 and now its an uphill battle getting him back on track.
Analyse the situation and try to ascertain if the parents do absolutely everything for him because when they don't he freaks out. If this turns out to be the case, knowing is half of the solution. I wish someone had told me sooner., I emphasize so much. I remember being always so exhausted the first four years and how much it negatively affected my 2nd son.
It got better for us. My eldest son grew out of the tantrums. He's more open to trying new and fun things.
We used to get so sad when we see our relatives and friend's kids do normal kid stuff. We didn't get to do those with our first born because he didn't speak and was very fickle with activities. My husband especially. He'd been dreaming of being able to have conversations with our son and we focused on getting him better so much, that we didn't realize our 2nd born had become a glass sibling.
So, hang in there., My daughter was exactly the same way, nonverbal and barely acknowledged me. She's 9 now and has learned enough words that we've been having small back and forth convos! Being able to communicate in any way makes things so much easier! I also learned to pick my battles. I let her throw her tantrums in grocery stores and ignored anyone who might've had a problem with it. Once she learned she couldn't embarrass me in public any more, she's rarely thrown a tantrum and she gets over it in less than a minute. And, he loves you very much, he might just not know how to show it to you. If you feel like things are getting stagnant with your ABA therapy, you can always move his care to another clinic. There could be therapists out there that he might connect with better.
PS...I totally have a mental health counselor who has been helping me deal with all this for years. It's the only thing that keeps me going sometimes lol, Was similar to where you were at at that age. It’s hard. Damn hard. My son still has plenty of challenges but is night and day from where he was then. About 6 was a significant change for him. He beat Zelda breathe of the wild by himself at 7 (can beat all the bosses without getting hit). He can say basically any word now even if he doesn’t tell you long stories but instead speaks in phrases and fragments mostly. Now has strong problem solving and math skills. Funny sense of humor and he’s loving good hearted kid I am proud of. He can memorize songs he hears a few times well enough to play them on keyboard correctly. He’s bonded with our dog and loves to play outside with him. We go to the park now and enjoy ourselves with other kids. He loves swinging and tall slides. Kid has no fear at amusement parks and it took until about 7-8 to be able to go on vacations like the beach or Disney world. We can do those things now and he has a great time. He struggles with some things other find easy but also surprises the heck out of us doing things better than adults I know.
Many autistic kids aren’t on a typical timeline. They have their own development timeline and where he is now is only just that, and isn’t his ceiling. You are going to have more hard times in the future but for most people it does change.
Hang in there parent. He needs you and you can do this. I’m rooting for you.
As a side note, I don’t know if ABA even does anything and wonder if they just need more time to develop. It’s also wildly unpopular in general by a majority of autists (at least on the autism subreddit). The US government (DOD) says it makes little to no difference.
https://therapistndc.org/aba-is-not-effective-so-says-the-latest-report-from-the-department-of-defense/
https://altteaching.org/update-us-government-reports-aba-doesnt-work/
Here is the report:
https://altteaching.org/wp-content/uploads/2020/10/Annual-Report-on-Autism-Care-June-2020.pdf?x55003
“. The findings from this analysis continue to demonstrate concern with overall outcomes of beneficiaries participating in the ACD. While the change scores demonstrated small but statistically significant improvements after 12 and 18 months of rendered ABA services, and that most baseline severity scores and most ages demonstrated some percent change in scores from baseline, there was no comparison group (no treatment or another type or of treatment) to determine the attribution of these changes. It is also not clear if these changes are clinically significant. Subsequently, there is no way to know if the relatively small change observed here is the result of ABA services, other services received, or if this simply a result of maturation. However, the findings are clear that the number of hours of ABA services rendered did not improve symptom presentation of ASD based on the PAC scores. This finding strongly suggests that the small changes noted are not related to ABA services. “, I feel like it’s helpful to remember that NT kids can be a bitch. I have been blessed with an NT child and seriously, the endless talking. The endless complaining and mind games. With my autistic son, it’s all logical and yes/no - black/white. And it’s silent. My NT kid argues whines cajoles at alllll hours of the day and night. Everything is a battle. A mental battle, he’s constantly trying to outsmart me and guilt his way into evvvvverything. And that two year old you saw interacting with his mom, he has tantrums. Loud intense tantrums that require him to be pulled out of stores kicking and screaming. Parenting is seriously really tough no matter how you slice it. It’s harder for us in some ways and I promise, easier in others., I am at my breaking point too. My daughter is 4. She resists and screams at EVERYTHING. The lists of things she continues to do despite being told endlessly not to is infinite. Throwing food on the floor, throwing toys, screaming, jumping on the couch, etc etc etc. ABA, special school, OT, you name it: what’s the point? It’s been 2.5 years since her diagnosis and I still deal with daily screaming in my face at every turn. I took her to the playground today. What did that get me? Screaming and a meltdown when she asked to go on the swing and then freaked out when I told her she needed to hold on to the chains.
My wife and I are miserable and hate each other. My one-year-old is probably suffering the effects of a dysfunctional household and sees us frequently arguing and her sister melting down all day. I have no doubt this is going to fuck her up as well.
I’m just done. I’ve had it. Currently googling how to put her up for adoption as we speak., Chill.... my son is 3,5 now and imitates everything he sees, he even played pretend today (playmobil figure went shopping) and he was absolut non verbal at the age of 3 and non responsive (he does not talk in full sentences and does seldom answer questions, we work on it yesterday I asked him what he did with his grandma and he told me "pancakes" (he ate them) but answers like that are raw).. stop worring it wont change a thing and is not helpful, your son is ok stop pushing him where he does not want to go, childhood is not a race., Are you in the US? ECI transitions to the school district at 3 which opens up some brand new opportunities. Our district has an ECSE-3 class, a school bus came to take him for half a school day where he received biweekly speech therapy sessions (small and large group), OT, and DiR FloorTime therapy.
It was also a game changer for my patience level, having that break. We could’ve driven him but since it was only a half day and he was eligible for the school bus… we had him ride the bus, it made our break a bit longer., It's incredibly hard. My daughter is 4.5 non verbal almost no receptive language.
Untill the last 3~ months my daughter was very similar to your son, anything and everything triggered a meltdown. Recently she has made huge strides in many areas. It might not get "better" but it will get different and that's ok.
At the beginning of the year I started keeping a diary of any little improvements; looking back even when I thought we weren't getting anywhere small things would happen. Did she not throw all her food on the floor, no drink bottles where thrown at my head., I'm so sorry you're in such a poor spot right now, as evidence by the comments, please know you're not alone. We're all in these trenches together!
The absolute hardest thing for me is that I could never feel that connection from my son. No hugs, happy glances, "I love you SO much", little drawings, that stuff. I was just a freaking slave to do what he wanted, when he wanted. But there has been a definite shift.
My son was much like yours, everything seemed to be an epic meltdown. Even at home, in a very quiet house. Something that was OK yesterday suddenly is not. Can't ask him to do anything. Screaming, hitting, kicking, biting... he'd bang his head, destroy anything within reach.
When he was 10, we finally got a great therapist (after many sucky ones) and I told her we can't keep on like this. We all agreed medication was the best option. Specifically for emotional regulation. We tried Strattera (as he does also have ADHD) and it was a major fail. He became more violent and aggressive.
We then tried guanfacine and it has been a miracle drug. My son has been on it for about 4 months and I barely recognize this kid! Today he asked to make pancakes, I barely helped him. Then, he did the dishes. Know what else? He cleaned his bathroom (his 1 chore) AND helped clean the playroom. To top it off, he's drank a full water bottle. And it's only 5PM.
He has started to hug me. It's definitely not his favorite thing, lol. Driving in the car the other day, out of nowhere he goes "Guess what? I love you." He is open to hearing he's misbehaving or that he may be wrong. He showers without a fight, he brushes his teeth- grudgingly, but still.
There are side effects and he doesn't like being on medication- though I think his big problem is just that he physically has to take it. We talked about them with his therapist and psychiatrist and all agree that the good outweighs the bad right now.
I honestly wish we had considered this when he was much younger. It makes me really think about how hard it must have been in his brain for him. How much he struggled. And yeah, if I'm honest, if those years would have actually been enjoyable.
Medication may be something to consider., It will 100% get better
Our son was 3 and had a lot of issues similar to what you’re having. He’s now 7, has a lot of friends, rides a bike, scooter, plays golf and is improving daily.
Hang in there. Stay the course and get help or assistance.
It will improve., Sorry to hear op but it will get better ,my daughter 5 non verbal is same ,it's gotten to stage where I don't even bother trying to leave the house anymore everywhere we go is a tantrum/meltdown I can't do it anymore ,but I will say she recently started in a ASU unit in my local area and we are starting to see improvement in speech and balehaviour ,social interaction etc. ,my nephew is 7 he went to same unit and like my daughter he was exactly the same ,but my sister keeps telling me they grow out of it at around 6/7 ,so hopefully it won't last forever ,just have to hang in there, Solidarity. This was my life from age 2-3 with my son. He was nonverbal at that time, and it was like he hated being alive. Everything pissed him off, constant meltdowns, couldn't make him happy. I cried daily and felt suicidal most days. He regularly bit me, scratched my face, and I just... I loved him, but I hated him. I gave so much to him, and he just seemed to lash out in response no matter how much love and patience I showed.
When my son turned 3, he made his first attempt at talking, and it's been gaining traction ever since. He's 4 and while he's still difficult, more than the average kid, he's so much easier than he was at 3 years old. He also talks a lot. I think that was what helped, ultimately, was getting him to communicate. We tried a lot of methods but nothing worked until he was willing to attempt verbalizing, then he just took right off. It's like something finally clicked in his brain.
When he turned 3 he got a bit easier. At 4 he was even easier. I think it was a combination of aging up and learning to communicate his wants. He's generally a very happy boy now, and he's able to follow most direction. Like I said, he's still difficult, he's not like magically cured of autism or whatever, but how he is now just does not compare to the nightmare he was between 2 and 3. School helped a lot in giving me a break and giving him structure (I had my son in nursery school, he attended an ASD kinderprep program, and now he's in kindergarten and keeps asking to go to school, lol), This age was so so hard. Lots of SIBs and lots of tantrums. I feel for you, hang in there mama. Sounds like you are doing your best and you really love your child.
Also comparison is the thief of joy. You will learn to celebrate different milestones than parents of typical children. I honestly deactivated my social media at this age. It would get me so down. My daughter just turned 8 and I learned how much better life was without social media and I never went back.
Hang in there. Sending you strength and patience., I hear you! Parenting autistic children is the ultimate test of will most days, and I think it does get easier as they aquire language. I have to guess what my children need, and I often get it wrong. Make sure to take care of your own mental health., I have 3 kids. One who is nonverbal and L3 autism. She’s 5.
3 is one of the hardest years for kids. Neurotypical, autistic - it doesn’t matter. It makes me think it has something to do with brain growth/development that happens at that age because it literally happens to all kids at 3.
For us 3 was “extended” some - but she made huge leaps at 3 that we never saw before!!
His little brain is taking in a lot right now. Every kid goes through this journey differently. I’m sure you and your husband are amazing parents - but sometimes we need to vent and get all this off our chest.
I promise, it does get better ♥️, Give it more time. My son still only says 3 or 4 words but he understands and he tries to imitate things I show him. Not everything but some things. It’s the little things that matter and when they come all of these hard times will be worth it. I know it’s exhausting but hang in there., I forgot to add that our son has been in ABA therapy since around 2 years old and he is 5 now and still attending. In my state, Louisiana, they can attend until age 7. By law he is required to start kindergarten and so we are dealing with all that too., I'd love to add something I saw on one of the posts on this subreddit..Hug your kid, time to time. It's therapeutic for the both of you and releases oxytocin! It's such a simple thing but it helps regulate their emotions
And I've been there...pretty sure I'm still there to some degree. Your son DOES love you. Don't ever doubt it. There are autistic adults today that don't know how to show affection. So rest assured your baby doesn't know how to express his love for you.
Also remember, comparison is the theif of joy. He is developing at is own pace, so have hope and hold it together, you'll get through to the other side!
Take care of yourself mama!!, I think a big thing is the process of finding a baseline of how you exist that keeps things generally tolerable. Like, he only eats these five foods, goes to these three places and does two activities at each one. And that’s it. Not much of a life, but if you restrict yourself to that then he cooperates and doesn’t act out. It is trial and error finding that, but if you find that baseline then you can choose each day whether or not you have the energy to risk a tantrum by trying something new.
My situation is different from yours, but in our areas of trouble it has life a life saver to identify a the constraints that - if we operate within them - keep things manageable.
I hope this doesn’t sound patronizing. My heart truly goes out to you, and I wish I could give helpful advice. Also he is at a tough age, and a LOT of kids get better. Ours did., It did get better for us. Our son was screaming, hitting, bitting, not talking and self hurting. We are both sound sensitive autist so we had to get ear protection to drown out his screams, that really helped our sanity. We have gotten to more kids and he still makes lot of noise but luckily it’s not screaming and tantrums anymore.
3 to 4 old is just hard for kids, our 2nd one had meltdowns/tantrums that lasted 2 to 4 hours and she was on a completely other planet. When she was 2 we could have the moments you are talking about and she is very talkative (which was sooo taxing when she was 2 to 3 years old because you never got a break, never and you couldn’t put on a headset).
The oldest didn’t sleep at night (he took a nap, woke up for 4 hours ish and then took another nap) which led us to be dealing with work on 2 to 3 hours of sleep. It was devastating since he also screamed and had tantrums.
We have noticed that the screaming and fighting often comes 2 to 3 months after he has has a bad thing happening to him (like going from daycare to kindergarten and kindergarten to school) and then his reaction could last months., I teach kids with autism. You are torturing him, sweetie, but you just don't know it. He is probably very sensory sensitive. He needs a dark room with Christmas lights, no noise, soft clothing with no labels, 100% cotton. He needs a very predictable routine every single day with no changes or surprises. No smells. Never ever force. Use what he loves to motivate and reward. To interact, join him in what he is doing, with full heart, to see what he gets out of it. See the world through his eyes. Let him lead. Watch how he loves it! Imitate him so he sees how that works. Don't mock. Parallel play., Oh and btw, HAPPY BIRTHDAY to him from all of us!!!, I’m so sorry. When he starts school, things will truly get easier. You will have a 6-7 hour break every day., Mine was he'll until he turned 5-6 and school did help a lots but before that's it's was tantrum hell every days. It is thankless but it did get better when he grew up don't give up and try to manage time for your younger one and most importantly figure a ways to still pour love and find time for you want husband
If you guys break it's won't help your kiddo :) stay strong and try to endure until it's does get a Lil better, I'm an autistic parent to an autistic 7yo.
It gets better after 3 and a half. But real better at 5.
But... does he have any AAC system in place to communicate? It could be the full hours of ABA are being too much for him and everything else becomes another demand he has to deal with.
Even though the special park you went to was tailor made for disabled kids, disabilities are not the same for everyone. Sometimes even if we really want to do something, the noisy/very colorful/full of lights environment and even the anticipation really puts us on the verge.
How can you help? Countdown the days, explain where you're going, what you're going to do, what's expected of him. With the help of images if possible. Let him get used to the place for a few minutes. Let him choose what he wants to do first. Let him know it's okay to take a break and to go home if needed. Find a quieter spot you can go so he can regulate himself if it gets too much to deal with. Bring headphones, sensory toys, whatever helps your guy.
Find what your kid likes to do. I know we want to show them new different stuff, but sometimes they're really not into it yet. But usually when we're dealing with others choosing what we're doing and how, it gets really difficult to try and be interested in things proposed by others in our 'free time'. Also remember your kid is not neurotypical. He won't act like one. He will not necessarily show love and affection the way you do. He feels it, but he may show it differently. Think of it like a second language. So he will play differently, he will show feelings differently, he thinks differently. Yes, you can show him different ways to do things, but it should be an added way, a new tool, not a way to replace how he does things., Between 2-3.5 was a horribleeeeeee time in my son’s life. It didn’t last forever., My son has only been in kindergarten for about a week and a half and has since waved hi and goodbye to me. Something I’ve tried to get him to do as an older kid and I haven’t seen him do since he was about a year old. Melted my heart! School definitely is helping tremendously., Yes! Right before my son went to PreK it was a mess. I cried everyday. School helped., These 2-5 year old years suck so bad. I’m so sorry you are going through this. My heart goes out to you, I second this. Things got better in many ways around age 4/5. Other things have been harder, but overall it has gotten easier, I agree. School was the only thing that made an impact in our lives. I could've written this post 4/5 years ago. He's 8 now and while things aren't perfect and he's not entirely independent, it is a massive improvement over where we were., My son is five and I completely agree that school has made a big difference. I definitely feel your pain though, I had to unfollow any other parent who has a child my son's age or even younger because it hurt so much to see what they're capable of while my son still was in nappies., I agree completely. 3-5 were very very challenging for my son. It got slightly better each year - but nothing compared to now. He’s 6 and has gained so much independence, and is really really compassionate., And I want to add, if following these steps is not as easy as it sounds at first, don’t worry. Day by day, it gets easier, it gets better. Mine is 6. Not only is it easier, but every tantrum and bad day I just see as a day of strengthening. I’m a fucking rock now., This is it!, >What we have learned is the terrible twos are delayed and or extended. Basically because of all the processing problems our children behave much younger than their biological age. A year is a huge difference between a two year old and a one year old.
Great, great point! Thank you, this made me think, I 100% was theorizing this with my husband a bit ago. When my daughter turned 3, I was going "she's basically starting to do what all my friends with NT kids were complaining about when their kids were newly 2!" I entirely would believe it's just the same(ish) developmental stages later., Definitely agree with everything said here, AND the minimalistic living set up. I waited to have kids so mine are on the younger side but when I had my first, he tried to destroy all my nice things so I learned to pack things away knowing that when he was older I’d be able to get them out again and enjoy their beauty. He’s now 12 years old and had I not had another with ASD I’d be able to do that but at least I know HE wouldn’t mess them up.
We painted out walls grey to make things easier on them, especially when they come home from school and need to decompress. Bare walls, no huge batches of photos and things to look at. Maybe one wall statement piece hanging in a room with a light source but that’s it.
It has really helped us.
Minimal furniture, an area rug, a tv, and play table for them to sit at and eat or color and they both have learned to focus more on how to do things and refining motor skills because there’s literally nothing else in the room TO focus on and anything else is way too high up to reach.
Your not alone OP. I still sometimes have these days too and it’s important to remember that your doing the best you can given the circumstances. Give yourself and little one some grace and try not to be too hard on yourself ; ), Your so right on stop comparing kids, I felt horrible and jealous that my sister in law’s daughter is taking so much and she’s only 1. Last night I felt bad that I was jealous, Do you have any recommendations for apps that helped your child with language?, This is such a great advice. My son is 3 and I have recently realized I am trying for him to "fit in" in environments where NT kids exist without any issues. I realized that when my son lies face down on the floor playing with his cars, is because he needs it, it helps him come down, and it is his safe place. I too often tried to correct him, pick him up... and then felt so bad for doing it. He is different, it is ok. But this was all my expectations and I still struggle with it sometimes., This is so true. We keep trying to go to the zoo and the aquarium because it seems like the right thing to do and I don’t want my kid to miss out. It then it turns out miserable for everyone. My sister in law wants us to go to Disney with the cousins, but honestly I think my kid would prefer the swing at the playground or a ride on the metrorail to an exciting Disney trip., This! You really have to reframe how your thinking! My son is much happier now that I got over thinking he needed to play with toys other kids played with, or do the things other kids find fun. Three was a very very tough age for us, but honestly it’s tough for almost all 3 year olds. Some stuff gets better with age some stuff gets worse I’ll be honest. My sons 10 now and still non verbal, and still struggles to handle this world around him. I don’t change him though I just try to help make his world around him easier for him to to be in., Thank you for that input. I guess I should’ve clarified when I asked if this is forever. I don’t want my son to change. I love him and all of his quirks. It’s the constant pain, crying, fighting, meltdowns, and complete disregard to my existence that is wearing me down. I love that he’s different, though. I just wish he would let me into his world. I am trying so hard. I want to bond with him, to be his friend, to be his playmate. But right now I just feel like he has no preference towards his father or myself. We could be trash bags for all he knows. As long as we get him snacks and toys when he requests, he is content., Read this comment to my husband. Thank you. Thank you thank you thank you. If I had the mental bandwidth to type out all of the emotions I had in response to this comment, I would, but I’m spent. So from the bottom of my heart all I can say is thank you for your comment., What medication?, Per your report from the Department of Defense they explain they had no real guidelines for how much or how ABA should be used. That is the one of the biggest problems with ABA in general. The report is also heavily focused on cost which is a huge concern if they are cutting corners while claiming to want to maximize results.
ABA is most beneficial and effective when it is done intensively with specific guidelines. This study actually used control group which the DOD didn't do. [https://pubmed.ncbi.nlm.nih.gov/11799654/](https://pubmed.ncbi.nlm.nih.gov/11799654/)
Some of the elements that make ABA work are:
* ABA isn’t easy. It requires work from the parents to try and set up play dates or outing, but it can reduce problematic behaviors, improve attention, focus, social skills, academics and increases language and communication skills.
* Not all ABA program are the same. Lots of ABA programs are vague, unfocused program, with a poorly trained aide and no real supervisions and no parent training. That isn't how a good ABA program works.
* ABA programs have program managers that develop a program on the person’s needs. An ABA program manager has to have a BCBA. The parents/caregiver have to work closely with the program manager and therapist and work on the program in different environments (home, school and community).
* Only positive reinforcements are used.
* The program needs to be fun.
* The program needs to be very flexible with constant data tracking, planning and ongoing assessments. The parents/caregiver are trained in the methodology and the therapists receive extensive training before as well as ongoing. Team meetings happen regularly including all the therapists and parent/caregivers. There are times when you will have a therapist that isn’t right for the program and you will need to switch them quickly.
* The best results come from intensive ABA program that works at home as well as school.
Before you start an ABA program these questions should be asked:
* How many BCBAs do you have on staff?
* Are they BCAA licensed through the state?
* How many behavioral therapists do you have?
* How many therapists will be working with my child?
* What sort of training do your therapists receive? How often?
* How much direct supervision do therapists receive from BCBAs weekly?
* How do you manage safety concerns?
* What does a typical ABA session look like?
* Do you offer home-based or clinic-based therapy?
* How do you determine goals for my child? Do you consider input from parents?
* How often do you re-evaluate goals?
* How is progress evaluated?
* How many hours per week can you provide?, I never push my son to do things he doesn’t want. I genuinely thought he would love the park, and when he didn’t, we called it a day and left. But thanks for reminding me to just chill., School bus was a huge game changer for us. We already had daycare so no change in the breaks, but transitions were so hard before. The bus makes the transition into the school day so much easier and my kid loves it., [deleted], I’ll fifth it. Hang in there. Things will get better., For us it only got worse before it got better. 5 was peak hell. I fully credit ABA with helping., It's definitely **not easy**!! lol
My kid is 14, and you will be able to conquer each phase. It's like waves. New phase, new learning curve. You'll be at the peak of awesomeness at phase 1 and then phase two will begin, and you start a new learning process.
The common phases include: baby, toddler, preschooler, elementary, puberty...
I'm at puberty so I don’t really know what comes next! Ha!
But I'm sure more phases will come., He’s very much a “gestalt language processor.” He’ll copy/mimic anything he hears. So it’s really just the variety that helps him. We didn’t know that before the tablet came into play, though, as he was hardly saying anything at 3., Our son loves the Khan Academy Kids and Lingokids apps (Khan Academy is free, but Lingokids only allows a handful of lessons for free each day, otherwise requires a subscription).
He taught himself to read through Khan Kids (he started reading at 2.5 and other than the standard reading we did with him over the years, had not given him specific reading instruction). They’re both really mellow and don’t seem to overstimulate him., Right! My cousin is always trying to convince us to go bc they give a disability flash where you don’t have to wait in lines. That’s what she does for her son whose also autistic however our kids are extremely different mine is scared of heights and hates large crowds so I’m like we better not 🤣, Some museums and aquariums have special days for just special needs kids, I suggest looking into that. Going to the children's museum would not be possible for our family if not for those special times!, Awe my son is almost 6 in a few weeks he is nonverbal as well! It’s gotten better but we still have our moments. Especially with events or trips. And yes I’ve finally stopped stressing him doing things outside of the norm or not liking things that are in the norm for kids and I feel it’s saved us both a ton of mental stress, And that is the experience of an Autist. They don’t want to be bothered with unless its a special interest if their own. I’m like this, my kid is like this, even my husband. We’re all spectrum living in this house.
Remember that ABA is normal people training and being overwhelmed with the way other people exist and live is what is happening. Just sit with your kiddo and enjoy being near them, watching them, and knowing you’re doing something.
Developmentally yes, he will be “younger” (even if that’s a terrible way to say it) but with developmental disabilities we take a little longer to get there, if we even get there at all., Glad I saw your post because I think we're facing the same thing, and most people don't quite understand what it's like. I do want to add something. I talked mostly about how hard it is with our autistic son, and how our younger NT son is filling our buckets with all the typical affectionate and cute things... but as our autistic son has been developing he has been connecting more and being more affectionate, and starting to fill that bucket too. Recently he's been initiating hugs and cuddles, and a couple times recently he initiated hugs with his brother. And that kinda thing hits us RIGHT in the feels. For the longest time he wanted nothing to do with his brother and would push him away, and his brother wanted so bad to connect and play with him. It was sad for us for a while. But he's slowly building those connections. And I think it's helping make younger brother more compassionate. So hang in there. Its gonna suck for a good while, but it WILL get easier. You got this!!, Guanfacine., I fourth this!!! My son is 7 (today, actually!) and he was a MONSTER around 3-4 years old. He would have these galactic tantrums when he was denied access to preferred activities. He’s still nonverbal, but he does consistently communicate his wants/needs with some hand gestures now. He’s still not great with following directions and can only do one prompt at a time. ABA and consistent preschool and now school have helped a lot.
It’s hard. I still grieve for the son I thought I’d have. His sister is NT and 8. She has a really hard time with it too. There’s not as much of a sibling bond now that they’re older. He adores her though., Thanks! Unfortunately he doesn’t even understand how to work a touch screen at all (just does not understand the concept whatsoever) and has zero receptive language so he doesn’t understand any game scenario. We did try Khan Academy in the 2 years old version but he does not understand it and he’s a little over 3.. hopefully he will understand sometime in the future because he cannot even use a communication device.., It’s not even the crowd - she’s just not into it. It’s like when you buy an expensive toy and the kid wants to play with the box it came in. Maybe when she gets older.
|
I’m not a parent, I’m a girlfriend (18/F) and I don’t think my boyfriend (19/M) is wiping
|
I’m not a parent, I’m a girlfriend, my boyfriend has autism, he can drive, and he has a job. However he does have other traits, controlling in the way, when I try to walk away from him he will grab me and not let me walk away, he doesn’t hurt me, and we have talked about it and after a couple of months we resolved the issue. There’s more issues like his social awkwardness, picky eating, a minor speech impairment, etc, that I’ve come to accept and love about him. the problem I need help facing is his hygiene, I don’t know how to approach it, I’m not his mom and he grew up without a mother or father figure, only older brothers who pushed him around. There has been a lot of times he’s disrespected me and not realized he did anything wrong and it takes a lot of forgiveness and understanding, often times I have to sit down and explain why what he did was wrong two or three times. Other than that he is a wonderful boyfriend, I never have to ask for flowers, if I say I’m hungry he puts food in front of me. He makes me feel wanted, and he is like my best friend. All the other places I’ve turned tell me to leave him, blah, blah, blah. Except that’s not the advice I’m looking for.
I really need advice that would help me talk to my boyfriend, 19, about his hygiene, I love him, but I can’t help but be grossed out by this issue, but don’t know how to tell him without hurting his feelings, as he’s a very sensitive person as am I.
A little background, my boyfriend and I have been in a relationship for two years, his family have told me in the past that he has a form of autism, and he does have a few autistic traits I have been able to pin point. He’s told me stories of how he didn’t know how to wash his body properly, or how to shave. So I taught him how to shave down there, aka did it for him, including the back door area. We were in the shower at the time, and he had sores, like blister like sores, two maybe three. I’m thinking maybe hemorrhoids I’m not sure? He said he gets those because he wipes to hard? He’s also mentioned he has to spread his cheeks to take a sh*t???? Is that normal? I told him to use Desitin thinking it might be a rash of some sort. This was maybe a month ago. Now my boyfriend isn’t a dirty person, and I’ve never been with someone who washed their hands as much as he does.
Which brings me to last night, we were in the bathroom and I was doing my skin care, when I finished I walked out thinking he was behind me, when he wasn’t I figured he was just washing his hands. After a few minutes I went back to the bathroom to find him throwing something in the toilet, I guess I distracted him because he forgot to flush, later that night I went in the bathroom and discovered brown sh*t stained toilet paper.. a lot of it… but nothing else in the toilet, literally just the toilet paper. And it’s been over 24 hours since he went #2, I almost puked realizing that all that shit has been stuck on his ass while we were cuddling before hand. When I asked him about it he said it’s because “it itched, and he didn’t want me to know”. What? This isn’t the first scenario something like this has happened. I’ve offered to help him wash before or will do my girlfriendly duties of trying to poking his ass, and he will make comments like “I don’t know if it’s clean” and he refuses help. If I try to bring it up as an issue he says nothing is wrong and quite frankly I feel awkward talking about it to him. I never really thought much of it and just usually laughed it off.
He also has a gagging smell that I used to chalk off as natural ball sweat? That’s what he told me the smell is. I’m prone to yeast infections, have been all my life, but I’m starting to think his hygiene has an influence on how many I’ve been getting lately. This whole situation really grosses me out, but I don’t know how I’m supposed to teach him how to clean his d*ck, balls n ass??? Or if the smell is just coming from the back area? I’ve tried suggesting baby wipes. But I haven’t really sat down and talked to him about this issue.
I have had a cousin who I used to live with that had autism and he had a very similar issue, and he was also very secretive about it, because I’m not to sure how a person doesn’t know how to clean themselves unless they have a mental disorder, or maybe this is a common issue? I’m not sure but some advice would really help. I’ve been avoiding intimacy, and we used to take showers a lot together, but thinking about what might be getting splattered on me and running across my feet makes me want to puke. Any suggestions on what I can do to resolve this without hurting his feelings or embarrassing him? He also has a high ego so he will act like he doesn’t know what I’m talking about, I’m really stuck, he refuses to see a dr because it’s “weird” “nothing is wrong” or because it’s “a waste of time”.
|
First, respect. At your age… I would have been out the door without thinking twice.
That said, Neurodivergent or not… you can’t have an ego and also be a super sensitive person. From the sounds of it, your BF is pretty high functioning and can absolutely handle and understand the premise of having some social constraints present in his life.
This is a matter of health. I think you just need to bite the bullet on this, in a nurturing, nonjudgmental way sit him down and explain that is a detriment to his life and not yours and that’s where your concern lies.
Just curious where his parents are in this?, I’m really sorry I’m not addressing your actual question. But the first part- blocking you from leaving and grabbing you- is abusive. It doesn’t matter if he has a diagnosis, it doesn’t matter if it isn’t his intent. It’s not ok. Please know that you deserve better and it’s not your job to fix the man you date.
I know you have good intentions, but if he’s coddled and infantilized to the point where he’s not wiping his ass because people are afraid of hurting his feelings- he should not be in an adult relationship. You’re 18. I know it’s hard but know that you don’t owe anyone this, but you owe yourself better., Ugh. I am a parent of a 5yo who is still pooping in his diapers so I have to wash him afterwards and check his bum for any rash so I kind of understand. The smell and the sight can be gross and overwhelming. But I'm a parent and there is nobody to do it instead of me. So do you love your boyfriend enough to deal with his messy problem? If the answer is yes (and if not, that's ok, you are not his parent and it's not your duty), then I guess you will have to treat it like a medical issue in a calm and nonjudgemental manner. Try to sit him down and talk to him honestly but with care. Don't say he is gross and makes you wanna puke, it will insult him and get him angry and defensive. Try putting yourself in his shoes. Imagine if somebody sat you down and said that your vagina smelled. How would you like them to say it to avoid offending you? Say that you love him and are worried about his and your health (yes, improper hygiene may cause yeast infections), that you care and want to help, suggest wet wipes once again, literally explain how to wash his bum, many men think they don't need to wash there specifically, itchiness can be caused by irritated unwashed skin and scratching it with dry paper will only aggravate the matter further. Suggest visiting a dermatologist. This conversation most likely will be super awkward for both of you but it's worth it.
Edit: wanted to emphasize once again, that you are not his parent or a caregiver and neither should you become one. It's ok to support and help your boyfriend to some extent but not ok to be codependent or parenting him., Hon, don't sign up for this literal crap so early in life. Please. And consider that this is a largely genetic condition, if you ever want to have kids with this guy. A lot of us here didn't have the choice/knowledge of this before having our kids, you do.
Personal theory of why autism is correlated with advanced paternal age: this is when income/social skills develop to an advanced enough degree to land a partner and start having kids. For some people, it takes a while., Sorry, but the conversation needs to happen. Just be as gentle as possible, as this is a sensitive topic for anyone.
Get him some perineal squirt bottles. They sell it on Amazon. He can use it to squirt and wipe dry, but he needs to know that he should continue "washing" until there are no longer any stains on the drying tissues., I suggest researching Cassandra Syndrome as it relates to partners and individual with ASD: https://www.psychiatrist.com/news/cassandra-syndrome-causes-anger-frustration-in-autism-relationships/#:~:text=Neurotypical%20partners%20of%20individuals%20with,neurotypical%20partners%20in%20neurodiverse%20relationships.
I also suggest researching “theory of mind” as it relates to individual with ASD so you can understand they literally don’t have the capability of putting themselves in your shoes or being empathetic towards you (this DOESN’T mean they’re sociopaths). Keep in mind WHEN doing this research your own firsthand experience—because it’s not PC to say “someone can’t empathize” when functionally you know through firsthand experience they cannot with ASD. A lot of public research will not state what is obvious because the Level1 ASD will come at them with pitchforks.
https://www.verywellmind.com/theory-of-mind-4176826
https://www.psychologytoday.com/us/blog/nurturing-self-esteem-in-autistic-children/202303/autism-and-the-theory-of-mind-tom?amp
THIS is the reason you have to explain to your boyfriend over and over again why he’s doing something that upsets you: because he literally isn’t capable of understanding what WOULD upset you or anticipate meeting that need.
I won’t even get into the whole hygiene thing—I’ll just say I’ve dated several men with ASD and the relationships constantly centered THEM—their needs, their desires, their issues—it was a STRUGGLE (just like you’re describing) to get them to understand why what they did upset me or to prioritize my needs at all.
I personally would never date a man with ASD again—-it may be an incompatibility issue on my part but I’m too old to have to constantly advocate for myself in a relationship, when that’s the definition of it on their end from Day1.
And last but not least.. you’re posting in an autism PARENTING sub.
You chose this sub because you’ve fallen into a PARENTAL roll with your boyfriend—-and you’re not even 20 yet.
If your boyfriend has a formal autism diagnosis there are public services available to him to get help because legally he has a disability—-he should be utilizing those services.
I would argue you’re not in an equal partner relationship—-you’re in a caretaking roll with someone you’re having sex with—which quite frankly has its own moral complexities., First you need to learn what a paragraph is.
Anyways, All I needed to know is that he don't wash himself and you've been putting up with it.
Love yourself better.
Don't put up with actual shit. He is a grow adult. Do you want to be his care giver??
You're only 18, there will be plenty of better boyfriends to come. ASD or not.
It shouldn't take a BF/GF 2 years to address hygiene issues or anything else in the relationship.
If you can't speak frankly with someone you love, do you really love them and do they really love you if they can't listen and AT LEAST contemplate a change etc.
If he can't address these issues and is unwilling to, he's basically saying you're not worth it. That he himself is not worth it.
Have the discussion be frank, no sugar coating it.
Set your expectations.
If he can't met them leave him. *and it make take doing so for him to realize why he's alone and to address it., Girl, with your background you have got to have CPTSD. That will present as ADHD sometimes. ADHD and ASD can have many similar features so you feel like you have a bond. This is a trauma bond. A partner should be able to help you grow and vice versa. If you have the same issues you will both just be stuck.
You can do better and that’s not a stab at him at all. He can too! I know you love him and it’s because it’s comfortable, feels safe and like you KNOW this love. You need to find someone that can care for YOU! I’m telling you right now as an Autistic mother of an Autistic child you DO NOT want to have Autistic children with a man that can’t even take care of himself appropriately. This is HARD and you will need emotional support. Please, take a break in your relationship, get therapy on your own and grow. If you still come back to each other it is meant to be. Fear helps no one.
You CAN do this!! You just have to choose if it will be hard to leave and test the waters or if you will have a hard life with him. Choose your hard. - signed an Autistic mother who would tell her Autisitc son’s GF the same thing if he was like this at age 19, I think you should be straight up with him. Tell him you are concerned about his health and tell him what you have observed. That you're saying this not to be mean, but to help him. Suggest daily showers, with you observing he properly clean his penis and anus. And only have baby wipes in the bathroom, no more toilet paper. Instruct him to wipe until there is no more poop... I know you're not his mom, but you said he grew up without a parental figure. It makes sense he doesn't know how to do basic hygiene properly. So you can make suggestions for him and show him. Let him also be aware that these things are affecting your relationship., Stop worrying about his feelings and just tell him it’s gross. Wipes, shower, bidet attachment, peri bottle. Lots of solutions to this problem; he needs to pick one., OP said his mom isn’t around. I’d also argue she’s fallen more into a parental roll to him than a girlfriend given she’s taught XYZ and now she has to tell him to wipe his own ass the correct way., Drug addicts, his mom abandoned him and his older brothers stepped in and took him in, his mother had 7 kids with 7 different dads, put 4 kids up for adoption and didn’t take care of the rest. My boyfriends dad is in prison for domestic violence, He doesn’t need a dermatologist—-he needs a case manager/social worker that is not having sex with him to help connect him to the appropriate resources.
Their relationship is giving serious Oedipal vibes… not healthy and I’d be shocked if she wasn’t codependent herself if she’s staying with him given the way he’s treated her and how dependent he is for help., Are you saying ASD men do not gain the social skills/resources to land a partner until later in life (and reproduce) and that’s why there that correlation?,
Today it's wiping this guy's ass, tomorrow it'll be managing his entire life for him on top of her own, doing all the childrearing because it's too triggering for him, and on, and on, and on.
Had I realized my partner was autistic, I wouldn't have stayed. The life we are living is so insanely difficult. I would never want a daughter to follow in my footsteps.
OP, think long and hard about this. Think about the life you want, really want. Are you with this guy because you're afraid you can't find anyone else? Because you don't want to hurt him?
A lot of us are reared to be people-pleasers. You are 18. Put yourself first. He will recover if you break up., It looks like you shared an AMP link. These should load faster, but AMP is controversial because of [concerns over privacy and the Open Web](https://www.reddit.com/r/AmputatorBot/comments/ehrq3z/why_did_i_build_amputatorbot).
Maybe check out **the canonical page** instead: **[https://www.psychologytoday.com/us/blog/nurturing-self-esteem-in-autistic-children/202303/autism-and-the-theory-of-mind-tom](https://www.psychologytoday.com/us/blog/nurturing-self-esteem-in-autistic-children/202303/autism-and-the-theory-of-mind-tom)**
*****
^(I'm a bot | )[^(Why & About)](https://www.reddit.com/r/AmputatorBot/comments/ehrq3z/why_did_i_build_amputatorbot)^( | )[^(Summon: u/AmputatorBot)](https://www.reddit.com/r/AmputatorBot/comments/cchly3/you_can_now_summon_amputatorbot/), Cassandra Syndrome just sounds like the Double Empathy Problem rephrased in a less savory way. My kid dated another autistic person and one of the things that made it work so well at first was that their communication styles and values when it came to socializing were so similar., She already is his caregiver., Agreed, the dermatologist would just be like "wtf, just wipe your ass." As an autistic parent (of autistic children) this is an issue that is beyond your responsibility to another person. He needs access to resources that are appropriate. This is something many married couples would *still* have issues with doing in their *senior years* if one of the partners got ill. You shouldn't need to *parent* him. That's not an equal partnership., To an extent. I have something called bpd. I grew up with an autistic step brother, an abused brother whose coping mechanism landed on SA me. My mother had munchousen by proxy so she pretended we were sick for money and attention. I grew up with mental, very physical, and medical abusive mom. All I’ve wanted all my life is one person to be close to. And this guy is perfect, he loves me and he will be here if I need him. He loves cars and his dream car is a skyline r 33. He is in car groups, and he just bought one of his dream trucks, a 720 Nissan minitruck. He’s not a bad guy. And he doesn’t need him to make his choices for him. He really does try, and autistic or not he got his own job by himself, his license, he has a hobby, shit he can tell u the make and model of a car just by hearing it down the road. He’s really smart (outside of math), and he may be bad at spelling. But he is in schooling to become an auto machanic and tuner. And I am starting my nursing program to become a pediatric nurse practitioner. We depend on eachother. I am dependent on the love he gives me that I never had as a child, and it’s ok that he needs my help and needs me to explain things sometimes, I can do that. I love him. My question was asking, how do I approach this and how can I help him., Yes, I think you are right, will update my comment., 💯 this, I'm saying that's my personal theory as to why ASD is positively correlated with paternal age and negatively with maternal age. I got absolutely nothing scientific to back that up with, just personal observations. (That is, the correlation exists, but causation is questionable)., Thing is, ASD adults can and do make good parents. Hubs and I both have traits, but we work out because our traits compliment each other (I'm mostly sensory issues, he's mostly social issues. He's also extremely sharp/hard working, while I play support and putter around.). We had kids late in life, when our issues were largely sorted out/therapy'd out, and when we had the resources to throw at our ASD kids. It was NOT always smooth sailing, and I do not think we would have done as well, having kids before mid 30s.
But, yeah. An adult that can't pull their weight, in whatever capacity, is not a good relationship prospect. ASD isn't some kind of a redeeming feature., Lacking theory of mind means they don’t instinctually empathize., I would suggest exploring individual therapy for yourself to address your own childhood issues—-and maybe your therapist would have suggestions what to do with your boyfriend.
It is AMAZING you’re going to nursing school! The number one thing I emphasize to women is to never give up your financial independence. You sound like you have a plan., I could see that!!!, I don’t think she saying anyone with ASD can’t parent at all, I think she’s saying the level of dependence and supervision this one specific person requires wouldn’t be a good person to have a child with., My husband and I used to think this about our kid, but it turned out to be more nuanced. We found out that our child doesn't *express* empathy in a way that NTs are used to seeing it communicated, which is why some people see them as aloof, unemotional, and robotic.
Our kid also doesn't have as much natural inclination toward attaching language to emotions and has also been in the situation where they know they've shared in someone else's feelings, but can't come up with a word for said feeling immediately like is expected.
In terms of actually realizing the different ways others think, they've made vast leaps since childhood, and I think the rather dry, convoluted, scientific way they describe others' emotions and interpersonal patterns puts off people who just seem to want to sort feel out perspectives but not know how people arrive at them or analyze them., Yeah, I understood that. Was caveating that comment with one that ASD people can parent, just maybe not that particular person. :-), I don’t think they’re aloof or unemotional robotic, that’s why I clarified “not sociopathic” because to suggest a lack of empathy makes people to jump to that conclusion. And I made the point to add that caveat because *I* have theory of mind and I care about how other people feel/perceive ASD individuals.
But I’d argue for the most part they don’t have FUNCTIONAL empathy in the respect that their empathy does not allow them to modify their behavior easily FOR others out of concern (if anything, it’s the opposite), OR the ability to “predictively” read a person and understand how their words or actions would harm or upset them and alter it following that. I’m sure they can learn an individual people’s likes and dislikes over time, and social mores, etc., but that’s not empathy.
I’ll give you an example: SOME Level1 ASD are extremely vocal that they DO NOT have a disability—they’re just “differently abled” and expect all of society to adapt to their ND needs (but somehow not the other way around..). What gets drowned out in this entire conversation are the Level3s who most certainly have a disability and need all the assistance and advocacy they can get——did the Level1s ever stop for second think about how their media campaign would affect their Level3 ASD counterparts, who are also on the spectrum? Of course they didn’t—-because they have no theory of mind and thus no functional empathy.
If you search on here for “Cassandra syndrome” you’ll see a post come up under an autism sub and its basically a bunch of ASD individuals laughing/not comprehending at the thought of how a NT could ever have a hard time being with someone ND because *they* are the ones with a challenging disability.
They literally cannot put themselves in anyone else’s shoes.
|
I’m struggling
|
My 2 year old was just diagnosed with level 3 autism this month. We are on a waiting list for him to start ABA therapy within the next month or so. I’m also 30 weeks pregnant and I’m just so exhausted I don’t even feel human some days. I’m scared my new baby is also going to be on the spectrum. I don’t know how I’ll be able to handle two children on the spectrum if so. I almost feel guilty for having another child when my son has such high support needs. It’s hard enough as is & my son has extreme sleeping problems, & now I’ll also have a newborn here soon. I’m just scared 😭 Has anyone been in a similar situation?
|
I was in your exact position not long ago! Between ages 2 and 3 my son has chilled out a lot and he's sleeping has gotten much better. The baby has been really good for him and they both love eachother. I do fear that I see signs in my second child and that's hard but she's way more chill than my son ever was and I think they will be totally different. It's hard but it will be okay. Sending you lots of good wishes!, When you see that baby and how your 2 year old responds to him/her, you'll see it will all be ok and worth it., I was so scared pregnant with my 2nd. My oldest has ASD but we weren’t given a level. At the time she had just started special ed pre k. I was so worried how it would all work out. Honestly you find a groove somehow. It’s tough at first I won’t lie to you. Expect your oldest to regress a bit somehow… but once you get past those first 8 weeks it gets a lot better… get that routine down as strict as you can. It helps the kids and your sanity… now I’m pregnant with #3. And I’m still a tiny bit worried but nothing like I was with #2. Now I’m just anticipating adding to our routine and having to get used to that., I was in your shoes. My current 16 year old was diagnosed at age 3, just after the birth of his baby sister. My son is level 2/3 (verbal but very high support needs and self-injurious behaviors).
I remember being so tired I thought I would faint. The whole time was a blur. I bought speech therapy DVDs and would play them for my son while trying to nurse my daughter. I honestly think it helped him! And my daughter learned to talk and read very early, I think due to us constantly doing speech activities at home with her brother.
My daughter doesn't have ASD, but she does have pretty severe OCD. A different kind of challenge, but we are managing., I was in your exact position not long ago! Between ages 2 and 3 my son has chilled out a lot and he's sleeping has gotten much better. The baby has been really good for him and they both love eachother. I do fear that I see signs in my second child and that's hard but she's way more chill than my son ever was and I think they will be totally different. It's hard but it will be okay. Sending you lots of good wishes!, When you see that baby and how your 2 year old responds to him/her, you'll see it will all be ok and worth it., I was so scared pregnant with my 2nd. My oldest has ASD but we weren’t given a level. At the time she had just started special ed pre k. I was so worried how it would all work out. Honestly you find a groove somehow. It’s tough at first I won’t lie to you. Expect your oldest to regress a bit somehow… but once you get past those first 8 weeks it gets a lot better… get that routine down as strict as you can. It helps the kids and your sanity… now I’m pregnant with #3. And I’m still a tiny bit worried but nothing like I was with #2. Now I’m just anticipating adding to our routine and having to get used to that., I was in your shoes. My current 16 year old was diagnosed at age 3, just after the birth of his baby sister. My son is level 2/3 (verbal but very high support needs and self-injurious behaviors).
I remember being so tired I thought I would faint. The whole time was a blur. I bought speech therapy DVDs and would play them for my son while trying to nurse my daughter. I honestly think it helped him! And my daughter learned to talk and read very early, I think due to us constantly doing speech activities at home with her brother.
My daughter doesn't have ASD, but she does have pretty severe OCD. A different kind of challenge, but we are managing., I was in your exact position not long ago! Between ages 2 and 3 my son has chilled out a lot and he's sleeping has gotten much better. The baby has been really good for him and they both love eachother. I do fear that I see signs in my second child and that's hard but she's way more chill than my son ever was and I think they will be totally different. It's hard but it will be okay. Sending you lots of good wishes!, When you see that baby and how your 2 year old responds to him/her, you'll see it will all be ok and worth it., I was so scared pregnant with my 2nd. My oldest has ASD but we weren’t given a level. At the time she had just started special ed pre k. I was so worried how it would all work out. Honestly you find a groove somehow. It’s tough at first I won’t lie to you. Expect your oldest to regress a bit somehow… but once you get past those first 8 weeks it gets a lot better… get that routine down as strict as you can. It helps the kids and your sanity… now I’m pregnant with #3. And I’m still a tiny bit worried but nothing like I was with #2. Now I’m just anticipating adding to our routine and having to get used to that., I was in your shoes. My current 16 year old was diagnosed at age 3, just after the birth of his baby sister. My son is level 2/3 (verbal but very high support needs and self-injurious behaviors).
I remember being so tired I thought I would faint. The whole time was a blur. I bought speech therapy DVDs and would play them for my son while trying to nurse my daughter. I honestly think it helped him! And my daughter learned to talk and read very early, I think due to us constantly doing speech activities at home with her brother.
My daughter doesn't have ASD, but she does have pretty severe OCD. A different kind of challenge, but we are managing., I was in your exact position not long ago! Between ages 2 and 3 my son has chilled out a lot and he's sleeping has gotten much better. The baby has been really good for him and they both love eachother. I do fear that I see signs in my second child and that's hard but she's way more chill than my son ever was and I think they will be totally different. It's hard but it will be okay. Sending you lots of good wishes!, When you see that baby and how your 2 year old responds to him/her, you'll see it will all be ok and worth it., I was so scared pregnant with my 2nd. My oldest has ASD but we weren’t given a level. At the time she had just started special ed pre k. I was so worried how it would all work out. Honestly you find a groove somehow. It’s tough at first I won’t lie to you. Expect your oldest to regress a bit somehow… but once you get past those first 8 weeks it gets a lot better… get that routine down as strict as you can. It helps the kids and your sanity… now I’m pregnant with #3. And I’m still a tiny bit worried but nothing like I was with #2. Now I’m just anticipating adding to our routine and having to get used to that., I was in your shoes. My current 16 year old was diagnosed at age 3, just after the birth of his baby sister. My son is level 2/3 (verbal but very high support needs and self-injurious behaviors).
I remember being so tired I thought I would faint. The whole time was a blur. I bought speech therapy DVDs and would play them for my son while trying to nurse my daughter. I honestly think it helped him! And my daughter learned to talk and read very early, I think due to us constantly doing speech activities at home with her brother.
My daughter doesn't have ASD, but she does have pretty severe OCD. A different kind of challenge, but we are managing.
|
Juicing
|
So I have a question. We have two boys with ASD (1 is 7 level 3 nonverbal, and 1 is 5 level 2 nonverbal) and the younger one will eat fruits but no veggies. The older will eat neither. We have had this standoff often just trying to get them to eat something semi-healthy. Has anyone tried juicing to try and get their kids proper nutrients? I just made a bunch for them to try this weekend. They like the fruity v8 juices. The older boy tries to refuse water constantly so we mainly cut their juice with water and sometimes try and do just water. Their mom gives them only Koolaid and juice, and she is the custodial parent but when I had them for the summer they got used to other things. I noticed a big change in behavior and progress once they were eating a little healthier last summer.
|
We don't juice, but we do give our son smoothies from time to time. He's an awfully picky eater and often lacks nutrients. This has always been an issue for us, as he rejects most fruits, veggies, and meat.
I just gather one or two veggies, steam them, and puree them. I like to mix apples or bananas for a bit of sweetness. These are all homemade, and I'm sure they're are better options for mixed choices of veggies and fruit. If your kiddos like milkshakes, why not try a smoothie?, We don’t juice. But my son is super picky. I made a pasta sauce and pureed veggies in to it. Then froze it in a cupcake tin so I can take out small portions to use. My son loves meatballs so I will put it over meatballs and he loves it.
A good veggie for sneaking in juices or purees is spinach. I made popsicles out of the smooth my son didn’t like and they were a moderate success. So that’s another option if they like popsicles., I find there are many virtues to muffins. One of my guys will only eat pumpkin muffins, but he doesn't mind if I also add carrots or zucchini to the muffin. I always add vanilla protein powder and flax seed. He just doesn't want to know about it. He knows that I make them extra healthy with things he wouldn't normally eat. I blend everything up quite fine and it all works out.
We also do "wild berry" muffins that is the same deal but with whatever fruit I happen to have. Keep the name and the end product with the same consistency and you can get away with a lot.
I can get both kids to eat berries and apples straight. The apples save us on not having to use added fiber, but if I did... I would put it in the muffins., Blend vegetables into whatever they’re eating or try vegetable powder, try and find one that doesn’t have a lot of taste to it., Neither one of them really like milkshakes, I tried a smoothie once before but they don’t like to drink from straws they use the 360 sippy cups but I have been trying to introduce cups with straws again so that maybe it won’t be too thick for them to drink from a cup. When I have given them a milkshake before they refused to drink it normal and kept getting mad because I wouldn’t let them scoop it with their hands lol, If juice is what they prefer, it's definitely better than no nutrients at all. We've been there with our son. He's just really hard to feed. Good luck to you and your family!, We don't juice, but we do give our son smoothies from time to time. He's an awfully picky eater and often lacks nutrients. This has always been an issue for us, as he rejects most fruits, veggies, and meat.
I just gather one or two veggies, steam them, and puree them. I like to mix apples or bananas for a bit of sweetness. These are all homemade, and I'm sure they're are better options for mixed choices of veggies and fruit. If your kiddos like milkshakes, why not try a smoothie?, We don’t juice. But my son is super picky. I made a pasta sauce and pureed veggies in to it. Then froze it in a cupcake tin so I can take out small portions to use. My son loves meatballs so I will put it over meatballs and he loves it.
A good veggie for sneaking in juices or purees is spinach. I made popsicles out of the smooth my son didn’t like and they were a moderate success. So that’s another option if they like popsicles., I find there are many virtues to muffins. One of my guys will only eat pumpkin muffins, but he doesn't mind if I also add carrots or zucchini to the muffin. I always add vanilla protein powder and flax seed. He just doesn't want to know about it. He knows that I make them extra healthy with things he wouldn't normally eat. I blend everything up quite fine and it all works out.
We also do "wild berry" muffins that is the same deal but with whatever fruit I happen to have. Keep the name and the end product with the same consistency and you can get away with a lot.
I can get both kids to eat berries and apples straight. The apples save us on not having to use added fiber, but if I did... I would put it in the muffins., Blend vegetables into whatever they’re eating or try vegetable powder, try and find one that doesn’t have a lot of taste to it., Neither one of them really like milkshakes, I tried a smoothie once before but they don’t like to drink from straws they use the 360 sippy cups but I have been trying to introduce cups with straws again so that maybe it won’t be too thick for them to drink from a cup. When I have given them a milkshake before they refused to drink it normal and kept getting mad because I wouldn’t let them scoop it with their hands lol, If juice is what they prefer, it's definitely better than no nutrients at all. We've been there with our son. He's just really hard to feed. Good luck to you and your family!, We don't juice, but we do give our son smoothies from time to time. He's an awfully picky eater and often lacks nutrients. This has always been an issue for us, as he rejects most fruits, veggies, and meat.
I just gather one or two veggies, steam them, and puree them. I like to mix apples or bananas for a bit of sweetness. These are all homemade, and I'm sure they're are better options for mixed choices of veggies and fruit. If your kiddos like milkshakes, why not try a smoothie?, We don’t juice. But my son is super picky. I made a pasta sauce and pureed veggies in to it. Then froze it in a cupcake tin so I can take out small portions to use. My son loves meatballs so I will put it over meatballs and he loves it.
A good veggie for sneaking in juices or purees is spinach. I made popsicles out of the smooth my son didn’t like and they were a moderate success. So that’s another option if they like popsicles., I find there are many virtues to muffins. One of my guys will only eat pumpkin muffins, but he doesn't mind if I also add carrots or zucchini to the muffin. I always add vanilla protein powder and flax seed. He just doesn't want to know about it. He knows that I make them extra healthy with things he wouldn't normally eat. I blend everything up quite fine and it all works out.
We also do "wild berry" muffins that is the same deal but with whatever fruit I happen to have. Keep the name and the end product with the same consistency and you can get away with a lot.
I can get both kids to eat berries and apples straight. The apples save us on not having to use added fiber, but if I did... I would put it in the muffins., Blend vegetables into whatever they’re eating or try vegetable powder, try and find one that doesn’t have a lot of taste to it., Neither one of them really like milkshakes, I tried a smoothie once before but they don’t like to drink from straws they use the 360 sippy cups but I have been trying to introduce cups with straws again so that maybe it won’t be too thick for them to drink from a cup. When I have given them a milkshake before they refused to drink it normal and kept getting mad because I wouldn’t let them scoop it with their hands lol, If juice is what they prefer, it's definitely better than no nutrients at all. We've been there with our son. He's just really hard to feed. Good luck to you and your family!, We don't juice, but we do give our son smoothies from time to time. He's an awfully picky eater and often lacks nutrients. This has always been an issue for us, as he rejects most fruits, veggies, and meat.
I just gather one or two veggies, steam them, and puree them. I like to mix apples or bananas for a bit of sweetness. These are all homemade, and I'm sure they're are better options for mixed choices of veggies and fruit. If your kiddos like milkshakes, why not try a smoothie?, We don’t juice. But my son is super picky. I made a pasta sauce and pureed veggies in to it. Then froze it in a cupcake tin so I can take out small portions to use. My son loves meatballs so I will put it over meatballs and he loves it.
A good veggie for sneaking in juices or purees is spinach. I made popsicles out of the smooth my son didn’t like and they were a moderate success. So that’s another option if they like popsicles., I find there are many virtues to muffins. One of my guys will only eat pumpkin muffins, but he doesn't mind if I also add carrots or zucchini to the muffin. I always add vanilla protein powder and flax seed. He just doesn't want to know about it. He knows that I make them extra healthy with things he wouldn't normally eat. I blend everything up quite fine and it all works out.
We also do "wild berry" muffins that is the same deal but with whatever fruit I happen to have. Keep the name and the end product with the same consistency and you can get away with a lot.
I can get both kids to eat berries and apples straight. The apples save us on not having to use added fiber, but if I did... I would put it in the muffins., Blend vegetables into whatever they’re eating or try vegetable powder, try and find one that doesn’t have a lot of taste to it., Neither one of them really like milkshakes, I tried a smoothie once before but they don’t like to drink from straws they use the 360 sippy cups but I have been trying to introduce cups with straws again so that maybe it won’t be too thick for them to drink from a cup. When I have given them a milkshake before they refused to drink it normal and kept getting mad because I wouldn’t let them scoop it with their hands lol, If juice is what they prefer, it's definitely better than no nutrients at all. We've been there with our son. He's just really hard to feed. Good luck to you and your family!
|
Just awake thinking about what will happen to my sweet boy when my spouse and I pass
|
My son is only 3, and a total mamas boy. I’m his safe person, and we are very attached. He loves his dad too, but I’m the one he wants when he’s hurt or scared or cuddly.
I have no siblings. He is my only child. I doubt my husbands only sibling would take him in if something happened.
We’re only 31, but last year they found stage 3 precancerous cells that had grown quickly in a very short amount of time. What I had also increases my risk for several other cancers.
My boy would be devastated if something happened to me. And the worst part is, he wouldn’t understand why. To him, I would just not come home for him one day and he would never understand it (he is level 3 and likely intellectually disabled).
Thoughts like these keep me up in tears all night sometimes. The thought of him having to go on without me wondering why mom left him. The thought of him going into a group home when we’re too old.
I really hate this.
|
I could have wrote this. Also 31 and had precancerous scare earlier this year. I’ve been working my butt off to get in the best health of my life because husband is not health conscious and I HAVE to be around for my son. I also have to actively not let myself go to the what ifs because the stress is just as bad for my health. Only advice I can give is try and stay positive and plan for the future when you can., There isn’t a day that goes by where I don’t think about what the future hold for my son (now 11) but we know this that he will be loved every day until we’re gone. I see it as a glimmer of hope every day we work with him that he continues to gain independence. When we first got a diagnosis we weren’t sure if he would ever speak but he continues to amaze us and nobody knows what the future holds but you have to move forward and accept that for your child’s sake., Please please set up a living trust with DPOA and Wills for your spouse and yourself., You’re not alone with these thoughts, I just try to keep my head in a positive space and prepare my son as much as I can financially. I have a younger son that is not on the spectrum and I hope with the house and the funds that I set up he will be willing to care for his older brother., I’ve been struggling with this same thing lately. It’s terrifying to me and keeps me awake at night. 33(f) to a level 2 very attached 4 year old. Crazy to think others are up at the same time worried about the same thing!, Depending on what country you are in, you can set up a disability trust for your son. So if anything happen to you and your husband, two trustees that you named will help manage the finances for your son so no one takes advantage of his finances after you're both gone. Ideally trustees should be one from your side and one from your husband's side.
Separately to that you would have to name guardians to take care of your son on a day to day basis. This I think is the harder one to solve. Taking in a family members NT kids if something happens to them is one thing. A ASD child is a whole different level of responsibility. It's hard to put that on anyone.
We are in the process of trying to do both of the above. We have to get to have the conversations with the people we would ideally like to take care of our son if the worst ever happen.
We all have these thoughts, but children adapt and evolve. We don't know what our children will be like when they get to 18,21,25,30 etc, it's a awful term, but everyone understands it; they could end up being high functioning autistics, capable of working, falling in love, having a family of their own etc. We just don't know. All we can do, is try to do the best by them in the here and now. Love and support them and hope it will be enough., Same here my son is an older teen and I think those thoughts will always be on our mind as parents of special needs kids. Not much to add but you are not alone., I think about this all the time . I have two kids one with and one without autism. I feel like I have to work to make sure they are taken care of. So this is what I am doing because I too felt like you felt . I am setting up a special needs trust to take care of my kid. I have looked into a home for special needs adults. That is will near to us as we get old. . It’s not perfect. But I hope what do will make sure he is taken care off.., I was worried about the same thing. My plan is to have him live with me for as long and possible. Hopefully, I can find a senior independent living community that will let him be a resident also. There are independent living communities that are just for adults with autism. They are projected to be more communities in the future that are just the same. Im probably going to switch careers into social work in adult special needs just to see everything I can do for him towards the end of my life., Same. No immediate health concerns (knock on wood), but anything could happen. My husband and I are only children, and his family all passed away, which leaves my mom and dad, who are meh options at best. Financially my he’s will be more than OK, and that’s one area I have control over, so that’s what I’m focusing on., I also could’ve written this. 3 yo and I had a stroke and almost died last year. Absolutely terrifying to think that my son wouldn’t understand what happened to me. I’d just be gone one day.
One thing that makes me feel slightly better is that we’re working on detting up a special needs trust for him for when we’re gone. Our home and all assets are owned by the trust. This way he will still qualify for assistance but have a backup plan, likely to be managed by his brother even though I hate the idea of putting that on him.
It’s so hard. It’s so scary. I’m sorry, you are not alone., This is always on my mind for my 3 year old. I thought it would be hard to have the retirement I want for myself… and now to think of what I would need to accumulate to provide for him for life even after I pass… it scares me so much I don’t even want to think of it. He has two brothers… but I also can’t imagine putting that burden of supporting him on my other little ones. I’m paralyzed on how to even approach this., Please start researching medicaid waivers, wills, special needs trusts, and what is available for kids with disabilities in your area now. It gives you time to research, plan, and get on waiting lists when it's time. It will give you a little peace of mind and get you ahead of the curve when it's actually needed., I feel this in my soul. Go to a lawyer and set up a living trust and will. Talk to people in your life that you do trust that could potentially take care of your son in the event something happens to both your husband and you. I worry all the time too so you are NOT ALONE. My philosophy when it comes to anxiety and my worries in life is be as prepared as you can be and have a plan and then when in doubt and this may not comfort you, but you will be gone and no longer have those worries, if you believe in Heaven and God then you can take the fact you can watch over him in beyond and if you don't you can try and take comfort that you have a plan you have prepared and those will stop once you are gone. I admit it's not the best comfort, but that is what helps me and if it helps anyone to try and look at it like that I hope it does. Just prepare and plan, talk to a lawyer and live each day with love and do the best you can with the information you have. My son is now 8 and didn't talk until he was four and still struggles, but there is progress so keep that in mind. None of us know what the future holds or looks like and remember you are doing a great job!, 3 is early enough that he could end up being as independent an adult as you and your husband for all we know. A lot of diagnosed level 3 toddlers change a lot in a few years. I get that it can be tough to balance planning with all the waitlists and bureaucracy going around and acknowledging that things could go either way at both opposite extremes., Where did you do that? Just called like an attorney?, I wouldn’t just assume that your younger son is going to take you up on that offer., At least for the US, I would not do this too prematurely, as from what I understand, once it's set up, the kid never ever has control over that money themselves, and I wouldn't want to decide something like that when a kid is 3, whose prospects could drastically change over the next decade., There are a lot of attorneys that specialize in creating a living trust and associated will documents.
If your child is unable to care for themselves due to profound intellectual disability, you can seek something called a conservatorship, which is usually managed by the Public Guardian. Using your living trust, wills and DPOA, after you die, you can specify who has the power to make decisions about your assets, especially when it comes to the care of your child. If your child is an adult with a conservatorship, the public guardian will take over as manager of your child’s funds and assets as long as no one else has been named as such., I could have wrote this. Also 31 and had precancerous scare earlier this year. I’ve been working my butt off to get in the best health of my life because husband is not health conscious and I HAVE to be around for my son. I also have to actively not let myself go to the what ifs because the stress is just as bad for my health. Only advice I can give is try and stay positive and plan for the future when you can., There isn’t a day that goes by where I don’t think about what the future hold for my son (now 11) but we know this that he will be loved every day until we’re gone. I see it as a glimmer of hope every day we work with him that he continues to gain independence. When we first got a diagnosis we weren’t sure if he would ever speak but he continues to amaze us and nobody knows what the future holds but you have to move forward and accept that for your child’s sake., Please please set up a living trust with DPOA and Wills for your spouse and yourself., You’re not alone with these thoughts, I just try to keep my head in a positive space and prepare my son as much as I can financially. I have a younger son that is not on the spectrum and I hope with the house and the funds that I set up he will be willing to care for his older brother., I’ve been struggling with this same thing lately. It’s terrifying to me and keeps me awake at night. 33(f) to a level 2 very attached 4 year old. Crazy to think others are up at the same time worried about the same thing!, Depending on what country you are in, you can set up a disability trust for your son. So if anything happen to you and your husband, two trustees that you named will help manage the finances for your son so no one takes advantage of his finances after you're both gone. Ideally trustees should be one from your side and one from your husband's side.
Separately to that you would have to name guardians to take care of your son on a day to day basis. This I think is the harder one to solve. Taking in a family members NT kids if something happens to them is one thing. A ASD child is a whole different level of responsibility. It's hard to put that on anyone.
We are in the process of trying to do both of the above. We have to get to have the conversations with the people we would ideally like to take care of our son if the worst ever happen.
We all have these thoughts, but children adapt and evolve. We don't know what our children will be like when they get to 18,21,25,30 etc, it's a awful term, but everyone understands it; they could end up being high functioning autistics, capable of working, falling in love, having a family of their own etc. We just don't know. All we can do, is try to do the best by them in the here and now. Love and support them and hope it will be enough., Same here my son is an older teen and I think those thoughts will always be on our mind as parents of special needs kids. Not much to add but you are not alone., I think about this all the time . I have two kids one with and one without autism. I feel like I have to work to make sure they are taken care of. So this is what I am doing because I too felt like you felt . I am setting up a special needs trust to take care of my kid. I have looked into a home for special needs adults. That is will near to us as we get old. . It’s not perfect. But I hope what do will make sure he is taken care off.., I was worried about the same thing. My plan is to have him live with me for as long and possible. Hopefully, I can find a senior independent living community that will let him be a resident also. There are independent living communities that are just for adults with autism. They are projected to be more communities in the future that are just the same. Im probably going to switch careers into social work in adult special needs just to see everything I can do for him towards the end of my life., Same. No immediate health concerns (knock on wood), but anything could happen. My husband and I are only children, and his family all passed away, which leaves my mom and dad, who are meh options at best. Financially my he’s will be more than OK, and that’s one area I have control over, so that’s what I’m focusing on., I also could’ve written this. 3 yo and I had a stroke and almost died last year. Absolutely terrifying to think that my son wouldn’t understand what happened to me. I’d just be gone one day.
One thing that makes me feel slightly better is that we’re working on detting up a special needs trust for him for when we’re gone. Our home and all assets are owned by the trust. This way he will still qualify for assistance but have a backup plan, likely to be managed by his brother even though I hate the idea of putting that on him.
It’s so hard. It’s so scary. I’m sorry, you are not alone., This is always on my mind for my 3 year old. I thought it would be hard to have the retirement I want for myself… and now to think of what I would need to accumulate to provide for him for life even after I pass… it scares me so much I don’t even want to think of it. He has two brothers… but I also can’t imagine putting that burden of supporting him on my other little ones. I’m paralyzed on how to even approach this., Please start researching medicaid waivers, wills, special needs trusts, and what is available for kids with disabilities in your area now. It gives you time to research, plan, and get on waiting lists when it's time. It will give you a little peace of mind and get you ahead of the curve when it's actually needed., I feel this in my soul. Go to a lawyer and set up a living trust and will. Talk to people in your life that you do trust that could potentially take care of your son in the event something happens to both your husband and you. I worry all the time too so you are NOT ALONE. My philosophy when it comes to anxiety and my worries in life is be as prepared as you can be and have a plan and then when in doubt and this may not comfort you, but you will be gone and no longer have those worries, if you believe in Heaven and God then you can take the fact you can watch over him in beyond and if you don't you can try and take comfort that you have a plan you have prepared and those will stop once you are gone. I admit it's not the best comfort, but that is what helps me and if it helps anyone to try and look at it like that I hope it does. Just prepare and plan, talk to a lawyer and live each day with love and do the best you can with the information you have. My son is now 8 and didn't talk until he was four and still struggles, but there is progress so keep that in mind. None of us know what the future holds or looks like and remember you are doing a great job!, 3 is early enough that he could end up being as independent an adult as you and your husband for all we know. A lot of diagnosed level 3 toddlers change a lot in a few years. I get that it can be tough to balance planning with all the waitlists and bureaucracy going around and acknowledging that things could go either way at both opposite extremes., Where did you do that? Just called like an attorney?, I wouldn’t just assume that your younger son is going to take you up on that offer., At least for the US, I would not do this too prematurely, as from what I understand, once it's set up, the kid never ever has control over that money themselves, and I wouldn't want to decide something like that when a kid is 3, whose prospects could drastically change over the next decade., There are a lot of attorneys that specialize in creating a living trust and associated will documents.
If your child is unable to care for themselves due to profound intellectual disability, you can seek something called a conservatorship, which is usually managed by the Public Guardian. Using your living trust, wills and DPOA, after you die, you can specify who has the power to make decisions about your assets, especially when it comes to the care of your child. If your child is an adult with a conservatorship, the public guardian will take over as manager of your child’s funds and assets as long as no one else has been named as such., I could have wrote this. Also 31 and had precancerous scare earlier this year. I’ve been working my butt off to get in the best health of my life because husband is not health conscious and I HAVE to be around for my son. I also have to actively not let myself go to the what ifs because the stress is just as bad for my health. Only advice I can give is try and stay positive and plan for the future when you can., There isn’t a day that goes by where I don’t think about what the future hold for my son (now 11) but we know this that he will be loved every day until we’re gone. I see it as a glimmer of hope every day we work with him that he continues to gain independence. When we first got a diagnosis we weren’t sure if he would ever speak but he continues to amaze us and nobody knows what the future holds but you have to move forward and accept that for your child’s sake., Please please set up a living trust with DPOA and Wills for your spouse and yourself., You’re not alone with these thoughts, I just try to keep my head in a positive space and prepare my son as much as I can financially. I have a younger son that is not on the spectrum and I hope with the house and the funds that I set up he will be willing to care for his older brother., I’ve been struggling with this same thing lately. It’s terrifying to me and keeps me awake at night. 33(f) to a level 2 very attached 4 year old. Crazy to think others are up at the same time worried about the same thing!, Depending on what country you are in, you can set up a disability trust for your son. So if anything happen to you and your husband, two trustees that you named will help manage the finances for your son so no one takes advantage of his finances after you're both gone. Ideally trustees should be one from your side and one from your husband's side.
Separately to that you would have to name guardians to take care of your son on a day to day basis. This I think is the harder one to solve. Taking in a family members NT kids if something happens to them is one thing. A ASD child is a whole different level of responsibility. It's hard to put that on anyone.
We are in the process of trying to do both of the above. We have to get to have the conversations with the people we would ideally like to take care of our son if the worst ever happen.
We all have these thoughts, but children adapt and evolve. We don't know what our children will be like when they get to 18,21,25,30 etc, it's a awful term, but everyone understands it; they could end up being high functioning autistics, capable of working, falling in love, having a family of their own etc. We just don't know. All we can do, is try to do the best by them in the here and now. Love and support them and hope it will be enough., Same here my son is an older teen and I think those thoughts will always be on our mind as parents of special needs kids. Not much to add but you are not alone., I think about this all the time . I have two kids one with and one without autism. I feel like I have to work to make sure they are taken care of. So this is what I am doing because I too felt like you felt . I am setting up a special needs trust to take care of my kid. I have looked into a home for special needs adults. That is will near to us as we get old. . It’s not perfect. But I hope what do will make sure he is taken care off.., I was worried about the same thing. My plan is to have him live with me for as long and possible. Hopefully, I can find a senior independent living community that will let him be a resident also. There are independent living communities that are just for adults with autism. They are projected to be more communities in the future that are just the same. Im probably going to switch careers into social work in adult special needs just to see everything I can do for him towards the end of my life., Same. No immediate health concerns (knock on wood), but anything could happen. My husband and I are only children, and his family all passed away, which leaves my mom and dad, who are meh options at best. Financially my he’s will be more than OK, and that’s one area I have control over, so that’s what I’m focusing on., I also could’ve written this. 3 yo and I had a stroke and almost died last year. Absolutely terrifying to think that my son wouldn’t understand what happened to me. I’d just be gone one day.
One thing that makes me feel slightly better is that we’re working on detting up a special needs trust for him for when we’re gone. Our home and all assets are owned by the trust. This way he will still qualify for assistance but have a backup plan, likely to be managed by his brother even though I hate the idea of putting that on him.
It’s so hard. It’s so scary. I’m sorry, you are not alone., This is always on my mind for my 3 year old. I thought it would be hard to have the retirement I want for myself… and now to think of what I would need to accumulate to provide for him for life even after I pass… it scares me so much I don’t even want to think of it. He has two brothers… but I also can’t imagine putting that burden of supporting him on my other little ones. I’m paralyzed on how to even approach this., Please start researching medicaid waivers, wills, special needs trusts, and what is available for kids with disabilities in your area now. It gives you time to research, plan, and get on waiting lists when it's time. It will give you a little peace of mind and get you ahead of the curve when it's actually needed., I feel this in my soul. Go to a lawyer and set up a living trust and will. Talk to people in your life that you do trust that could potentially take care of your son in the event something happens to both your husband and you. I worry all the time too so you are NOT ALONE. My philosophy when it comes to anxiety and my worries in life is be as prepared as you can be and have a plan and then when in doubt and this may not comfort you, but you will be gone and no longer have those worries, if you believe in Heaven and God then you can take the fact you can watch over him in beyond and if you don't you can try and take comfort that you have a plan you have prepared and those will stop once you are gone. I admit it's not the best comfort, but that is what helps me and if it helps anyone to try and look at it like that I hope it does. Just prepare and plan, talk to a lawyer and live each day with love and do the best you can with the information you have. My son is now 8 and didn't talk until he was four and still struggles, but there is progress so keep that in mind. None of us know what the future holds or looks like and remember you are doing a great job!, 3 is early enough that he could end up being as independent an adult as you and your husband for all we know. A lot of diagnosed level 3 toddlers change a lot in a few years. I get that it can be tough to balance planning with all the waitlists and bureaucracy going around and acknowledging that things could go either way at both opposite extremes., Where did you do that? Just called like an attorney?, I wouldn’t just assume that your younger son is going to take you up on that offer., At least for the US, I would not do this too prematurely, as from what I understand, once it's set up, the kid never ever has control over that money themselves, and I wouldn't want to decide something like that when a kid is 3, whose prospects could drastically change over the next decade., There are a lot of attorneys that specialize in creating a living trust and associated will documents.
If your child is unable to care for themselves due to profound intellectual disability, you can seek something called a conservatorship, which is usually managed by the Public Guardian. Using your living trust, wills and DPOA, after you die, you can specify who has the power to make decisions about your assets, especially when it comes to the care of your child. If your child is an adult with a conservatorship, the public guardian will take over as manager of your child’s funds and assets as long as no one else has been named as such., I could have wrote this. Also 31 and had precancerous scare earlier this year. I’ve been working my butt off to get in the best health of my life because husband is not health conscious and I HAVE to be around for my son. I also have to actively not let myself go to the what ifs because the stress is just as bad for my health. Only advice I can give is try and stay positive and plan for the future when you can., There isn’t a day that goes by where I don’t think about what the future hold for my son (now 11) but we know this that he will be loved every day until we’re gone. I see it as a glimmer of hope every day we work with him that he continues to gain independence. When we first got a diagnosis we weren’t sure if he would ever speak but he continues to amaze us and nobody knows what the future holds but you have to move forward and accept that for your child’s sake., Please please set up a living trust with DPOA and Wills for your spouse and yourself., You’re not alone with these thoughts, I just try to keep my head in a positive space and prepare my son as much as I can financially. I have a younger son that is not on the spectrum and I hope with the house and the funds that I set up he will be willing to care for his older brother., I’ve been struggling with this same thing lately. It’s terrifying to me and keeps me awake at night. 33(f) to a level 2 very attached 4 year old. Crazy to think others are up at the same time worried about the same thing!, Depending on what country you are in, you can set up a disability trust for your son. So if anything happen to you and your husband, two trustees that you named will help manage the finances for your son so no one takes advantage of his finances after you're both gone. Ideally trustees should be one from your side and one from your husband's side.
Separately to that you would have to name guardians to take care of your son on a day to day basis. This I think is the harder one to solve. Taking in a family members NT kids if something happens to them is one thing. A ASD child is a whole different level of responsibility. It's hard to put that on anyone.
We are in the process of trying to do both of the above. We have to get to have the conversations with the people we would ideally like to take care of our son if the worst ever happen.
We all have these thoughts, but children adapt and evolve. We don't know what our children will be like when they get to 18,21,25,30 etc, it's a awful term, but everyone understands it; they could end up being high functioning autistics, capable of working, falling in love, having a family of their own etc. We just don't know. All we can do, is try to do the best by them in the here and now. Love and support them and hope it will be enough., Same here my son is an older teen and I think those thoughts will always be on our mind as parents of special needs kids. Not much to add but you are not alone., I think about this all the time . I have two kids one with and one without autism. I feel like I have to work to make sure they are taken care of. So this is what I am doing because I too felt like you felt . I am setting up a special needs trust to take care of my kid. I have looked into a home for special needs adults. That is will near to us as we get old. . It’s not perfect. But I hope what do will make sure he is taken care off.., I was worried about the same thing. My plan is to have him live with me for as long and possible. Hopefully, I can find a senior independent living community that will let him be a resident also. There are independent living communities that are just for adults with autism. They are projected to be more communities in the future that are just the same. Im probably going to switch careers into social work in adult special needs just to see everything I can do for him towards the end of my life., Same. No immediate health concerns (knock on wood), but anything could happen. My husband and I are only children, and his family all passed away, which leaves my mom and dad, who are meh options at best. Financially my he’s will be more than OK, and that’s one area I have control over, so that’s what I’m focusing on., I also could’ve written this. 3 yo and I had a stroke and almost died last year. Absolutely terrifying to think that my son wouldn’t understand what happened to me. I’d just be gone one day.
One thing that makes me feel slightly better is that we’re working on detting up a special needs trust for him for when we’re gone. Our home and all assets are owned by the trust. This way he will still qualify for assistance but have a backup plan, likely to be managed by his brother even though I hate the idea of putting that on him.
It’s so hard. It’s so scary. I’m sorry, you are not alone., This is always on my mind for my 3 year old. I thought it would be hard to have the retirement I want for myself… and now to think of what I would need to accumulate to provide for him for life even after I pass… it scares me so much I don’t even want to think of it. He has two brothers… but I also can’t imagine putting that burden of supporting him on my other little ones. I’m paralyzed on how to even approach this., Please start researching medicaid waivers, wills, special needs trusts, and what is available for kids with disabilities in your area now. It gives you time to research, plan, and get on waiting lists when it's time. It will give you a little peace of mind and get you ahead of the curve when it's actually needed., I feel this in my soul. Go to a lawyer and set up a living trust and will. Talk to people in your life that you do trust that could potentially take care of your son in the event something happens to both your husband and you. I worry all the time too so you are NOT ALONE. My philosophy when it comes to anxiety and my worries in life is be as prepared as you can be and have a plan and then when in doubt and this may not comfort you, but you will be gone and no longer have those worries, if you believe in Heaven and God then you can take the fact you can watch over him in beyond and if you don't you can try and take comfort that you have a plan you have prepared and those will stop once you are gone. I admit it's not the best comfort, but that is what helps me and if it helps anyone to try and look at it like that I hope it does. Just prepare and plan, talk to a lawyer and live each day with love and do the best you can with the information you have. My son is now 8 and didn't talk until he was four and still struggles, but there is progress so keep that in mind. None of us know what the future holds or looks like and remember you are doing a great job!, 3 is early enough that he could end up being as independent an adult as you and your husband for all we know. A lot of diagnosed level 3 toddlers change a lot in a few years. I get that it can be tough to balance planning with all the waitlists and bureaucracy going around and acknowledging that things could go either way at both opposite extremes., Where did you do that? Just called like an attorney?, I wouldn’t just assume that your younger son is going to take you up on that offer., At least for the US, I would not do this too prematurely, as from what I understand, once it's set up, the kid never ever has control over that money themselves, and I wouldn't want to decide something like that when a kid is 3, whose prospects could drastically change over the next decade., There are a lot of attorneys that specialize in creating a living trust and associated will documents.
If your child is unable to care for themselves due to profound intellectual disability, you can seek something called a conservatorship, which is usually managed by the Public Guardian. Using your living trust, wills and DPOA, after you die, you can specify who has the power to make decisions about your assets, especially when it comes to the care of your child. If your child is an adult with a conservatorship, the public guardian will take over as manager of your child’s funds and assets as long as no one else has been named as such.
|
Just been asked to leave a store
|
This just happened, still pissed and shaken.
He is obsessed with elevators and escalators and he was riding an escalator in his favorite store by himself not bothering anyone or running.
The manager, that we had not seen before had a problem with that.
I told her point blank , come on it is after Xmas and he is not bothering anybody.
Still shaken
Sorry guys I needed to ven
|
It's probably considered a liability by the store. I wouldn't take it to heart., I wouldn’t let my kid play on those. When I was a kid, I had my shoe get stuck on one of those. It was terrifying for me as a kid. So that’s what goes through my head when my kids are on those., I hate to be a Brody, but those things can be dangerous.
https://youtu.be/UOMZ-Buj2n0?si=7luXSsDC6j_wUm5T, Was the issue that you weren’t with him?, My child is autistic too. Playing on an elevator isn't safe or ideal, especially when it's a child by themselves. And I respect what the manager has to say. If this were my child, I'd instead be reprimanding her because that's not how she's allowed to behave in public.
I honestly hope you can reach a place of understanding why this is the case. It's nothing personal. I'm sure the manager respects you and your child but cares more about each of your safety than anything. The elevator isn't a playground., Ok, you need to vent and your son will seek this input, but there is a clear infographic on all escalators with a child holding a parents hand. They are so dangerous, shoelaces or a loose string can lead to a serious injury.
Can you put a fitness stair stepper in your garage or his room? Should be supervised for the first few uses and no hanging strings/clothes toys but allot of autistic kids I know (including mine) use adult fitness stuff more than their caretakers use it. My kiddo also loves elevators and somehow learned to jump in them from another kid. We were visiting a hospitalized relative yesterday and settled on an elevator dance party with our feet planted. Stairs, bathrooms, doorways, and elevators are inherently dangerous, I tell all kids who come to my house that we do not play in stairs doors or the bathroom that it’s not personal it’s just math. There are lots of toys with lifts in them, my brother and I endlessly used a hot wheels shop with a lift. The playmobil scooby do mansion has an elevator., I wouldn’t take it to heart but see it as she or she is looking after your child for safety. Escalator is no joke if you fall or have a piece of clothing stuck on it.
Yes, your child likes elevator and escalator but it’s also not a playground. You want to set expectations is not a place to play., I’m sure they were just trying to prevent injury they might be held liable for. The escalators aren’t really meant for riding for fun., my son also like elevators..he watches alot of YouTube videos of people riding the elevators lol but he also LOVES automatic sliding doors at our mall there is obviously alot of them so we usually go to one were not alot of people go in and out of so we r not in the way ..anyways one day some old man came up to me and told me i need to watch my son and not let him play with the doors ..i was obviously watching him it made me mad too ...like my son was not doing anything wrong from what i was seeing ..he literally likes to watch the doors open and close ...if he got to close to the door i would tell him to step back and he would...i usually let him be by the doors about 15 min and he will be soo happy he does his happy vocal stimming then after that we continue our walk around the mall...but ever since that day ...i always get nervous someone is going to tell me something .. like i said he doesn't bother anybody i am with him right there so why cant some people mind there business, If it makes you feel any better I was basically asked to leave a Columbia store with my son and it didn’t even involve a mode of transportation., Sad this happened to you. Try not to take it personally. That sucks so hard tho., My child love escalators too. Sometimes we can ride together for hours.. Yes it's tiring.. but i love to see him happy or doing something he likes.
The most difficult thing was when he tried going the opposite way.. and the correct-way escalator is so far away...
It is difficult to get an autistic child/person who 'needs' to execute that particular coding program in their brain (in this case, riding this escalator), to understand that he/she needs to stop, or that it's dangerous.
It's a different difficulty than a medically challenged/disabled person, in the way that at least the medically challenged person can understand that he/she needs to stop, but sometimes autistic child cannot understand - their brain is wired differently, that they 'must' execute that program, they cannot really control/regulate it. Note that i'm not undermining anyone's difficulties, i just mean that they are different difficulty and kinda difficult to compare.. imho..
We think they can control it, but sometimes some autistic children just simply cannot control it. We take this control function for granted, because it is sooo easy for us. But for them, they need to learn how to code it, and code it, and then they need to practice it for a really long time, until the muscle memory memorize this new habit. It's difficult for them to adapt to new things.
It's different from us or normal people, where our brains are blessed with the automatic control or ability to understand/process/handle many different things at one time., What is with the severe down votes on anyone acknowledging this parents vent?, idk why everyone is downvoting you to hell. i understand the liability part and that yeah, you should have been with your kid, but the manager could’ve said that instead of telling you to leave? so fuck that guy., Why are there so many random downvotes in this sub? Like, on completely harmless comments offering support to OP? Has the sub become infiltrated?, Sorry for the language but fuck that manager!!! My wife and I are waiting for a day like this. Parents of three autistic boys., Seriously what is with all the downvoting on this post? You’d think there’d be more understanding in a sub like this. Disappointed., This is really upsetting. I'm so sorry this happened!, I'm sorry they asked you to leave. I wish the manager had just asked you to accompany your child on the escalator and allowed you to do that to his hearts content, so that you both could make sure you are in the right. Do you live near an airport? I ride with my kiddo all the time, up down, back and forth, ad nauseum., Regardless of liability or not I think you have every right to be mad! Personally I like to pull the I can sue you for discrimination against my disabled child! Let my kid do what keeps him regulated., [deleted], Wow, you just unlocked a memory for me. I use to love escalators too as a kid. I’m so sorry that happened! People are just miserable these days and think it’s always someone fault, don’t take it to heart, [deleted], I find that especially in the US, it's used as a catch-all to package prejudice, because the culture just accepts that we're "sue happy" without questioning the ridiculousness of some of our rules, and it shuts down the discussion, especially when kids are involved. As someone whose dealt with my share of shopping while black from security guards, I would know., I get that. But once I told her point blank that
My kid is autistic I expected some compassion.
Something that frankly is in short supply for parents of kids on the spectrum, Same. I'm terrified of escalators, but more so when my very young son got his shoelace stuck in one, He got ahead of me for a second, that was it, Hugs from a fellow parent on the trenches, I get your pain, and I am sorry, Bless you. That is exactly my situation
Edit what made this event so upsetting is that he only did it once, he got away from me for a second and I tried to explain myself to the manager, I suspect a slight troll infestation in our community. Check the comment history of some of the harshest comments, I wonder if we are indeed being trolled, I have been wondering about that myself. Funny how quickly the other side position got most of the “votes” here in the internet court.
For example no one has asked me how old my kid is, or what exactly happened ( the kid got exited and went ahead of me by 10 steps).
I just spent Xmas explaining to my wife family that autism has no cure and
It is not a thing that would be fixed with more discipline.
But to have to explain that here, again,is quite disappointing.
I honestly expected more from this group, Thanks, This isn't discrimination though. It's a safety measure, and it applies to all kids, regardless of disability or lack thereof. Should they be less concerned with safety when it comes to disabled kids? Now THAT would be ableist., That is disgusting!
https://www.reddit.com/r/Autism_Parenting/s/X6WDgOiRi0, As someone who as kidnapped as a young child, no.
Parent must be with them.
What is the plan when the elevator comes back empty? All it takes is a predator seeing a child alone on the elevator, and then the child is gone and the parent isn't even on the same floor to see.
Kid riding elevator for fun with parent/guardian? I could see it being annoying for an employee, *maybe*.
But a kid riding alone with no supervision? That is a recipe for injuries, lawsuits and kidnapping.
No store is going to take on that liability., Thanks, and I don’t get all the downvotes your reply is getting, Thanks and what is up with all the downvotes ?, Gross. Keep your transphobia to yourself., Going with the liability theme, I’m sure it wouldn’t have gotten you kicked out if you rode with him. Him being alone seems dangerous. Adults even get hurt on those things. My friend just got the tip of her shoe stuck at the bottom last week, fell face forward and scraped her leg on it. Turns out it was fractured.
I’m someone who’s already nervous on those things, her getting hurt kind of freaked me out., What did she say to you? Did she kick you out immediately?, Why? Why did you expect him to change their stance because your kid is autistic?, It’s disgusting to have to fight almost every time you take your child out in public because the world is disgusting., How so? It’s disgusting to have to threaten people with that for them to not harass you and your special needs child!, I'm sorry you had that experience but it's incredibly rare. Almost all kidnappings involve the other parent. Malls are full of CCTV. It's just not a realistic concern here., I don’t know, I guess bc I’m not chastising for the useage of escalators but whatever, After someone died at my local airport and it was reported that they have about one injury a week at said airport, I take escalators much more seriously. What I've seen with babies in strollers, and carrying packages...I can totally understand not letting a youngster go alone., My it is not her problem.
Look I get it, but I am sick and tired of being asked for leave and explaining my kid to others, Well yes. Crazy me for expecting some compassion, right after Xmas no less., I agree, there are a lot of fights like that and they are disgusting, I live this daily. This isn’t one of those fights and suggesting that you like to play the disability card, that’s what I was referring to as disgusting 😓, It’s not harassment, they’re asking you to follow the rules that are in place for your safety, like other have said, there are lot of risks. See my linked comment before asking how so, I explained it there., 1 why take the risk?
2 there was CCTV and security at Disney World when I was 7. I wandered off and was still taken into a wooded area behind a fence by a grown man. So it happens
3 I was taken by no less than 4 people because my parents thought it was fine to let me wander at a young age.
4 it depends on the city you live in. I lived in a human trafficking hub, a pretty major one in the US.
5 it's not always a person taking kids. Sometimes they just randomly decide to water off and get lost. A lost ND child is at increased risk of injury and even death.
So again, why take the risk?, You were asked to leave because the store would be liable in the event of an accident. Your son being autistic doesn’t negate that risk and it also doesn’t “trump” their reason for asking you to stop him.
I get so fed up with people feeling like they’re entitled because their kid has a disability, my daughter is a full time wheelchair user, she’s non verbal and has a whole host of life threatening medical issues but I would never expect special treatment to break rules or use her disability as an excuse for doing something we shouldn’t. We follow the rules like everyone else.
Now, being asked to leave because my kid is upset and I’m trying to calm her down if she’s not risking anyone’s safety, that would make me upset. You can’t just play the autism card to get your own way and get to do things others aren’t allowed to do.
I’m so sorry if that sounds mean or blunt but I really think it needs to be said. I say it with a huge amount of understanding and compassion, I truly do. I hope your son wasn’t too upset, maybe there’s another outlet for him to satisfy the sensory need that riding the elevator does, maybe a local park or something. I know it sucks when we just want to see that huge smile and find it difficult to know how sometimes., I only asked you what you said. I'm not attacking you here. I'm trying to be sympathetic.
Did she ask you to stop and you refused? Then yes, you'll get kicked out.
I'm sorry you're upset. Take 10 deep breaths. We need to keep it together for our children., Why is this being downvoted? Did I made a mistake asking for support?, That’s not compassion, that’s just expecting special treatment. It’s not safe for kids to be in the escalator by themselves, so why would you expect them to let your kid do something unsafe, just because he has autism?, That’s the way I am as a parent. My son has many disadvantages in this life and I’ll be damned if I let anyone try to kick me and my son out of a store for minding his business in a public place. I will play that card for him as long as I need to, this is how I teach him self advocacy., The risk of kidnapping is so vanishingly small it's far riskier to do *almost anything* else.
33 children are kidnapped by strangers per year in the US, out of 73 million children. That's .000054% of children per year.
By contrast, the risk of getting struck by lighting is much larger - 1/15300. Your child is 145 times more likely to get struck by lightning than kidnapped by a stranger.
The risk of driving to the mall given it's \~6 miles away is \~ 6 out of 1 million. Your kid is 13 times more likely to be killed *driving him to the mall* than getting kidnapped there.
Raising your kids to be independent adults - yes, even ND ones - means teaching them some degree of physical independence. You don't know OP nor how capable her kid is, and judging her for it because "kidnapping" is wrongheaded.
[https://www.npr.org/sections/health-shots/2010/08/30/129531631/5-worries-parents-should-drop-and-5-they-should?sc=fb&cc=fp/](https://www.npr.org/sections/health-shots/2010/08/30/129531631/5-worries-parents-should-drop-and-5-they-should?sc=fb&cc=fp/), No. It’s always *good to reach out for support. (This is the internet though, and not everyone is going to be able to support you in a way that feels helpful to you all the time. Pretty sure you’re already aware of this.)
You’re not responding to the comments, you’re reacting to the comments with a veil of defensiveness and frustration. That’s normal, we all feel defensive sometimes, and you experienced something that frustrated you *for you* and *for your* kiddo.
But these folk were just trying to get you to see another perspective (which is helpful to do, it creates less emotional pain when we try to see nuance), which you weren’t open to. Again, another normal human thing but Reddit does Reddit things and you were downvoted.
Just my observation., Now I am sure asking this,
And I never tend to go personal online,
Why are you even here?
Special treatment? Are you kidding me?
I am the only thing my kid has to protect him against a very hostile society.
I don’t judge your situation, but do have an inkling of how incredibly hard is to deal with an autistic child?
Or are you, as I am suspecting now, trolling on what used to be a safe space?
Edit I tried to check your profile , but you have a NSFW one… a strange profile for a parent, I totally hear that and I’m behind the concept, I will always advocate for my daughter and if I need to fight for her because she is being harassed, believe me I will die on that hill. Just not on an escalator where she could very easily die from a small mistake or be snatched by somebody. There’s a reason kids are meant to be with parents, it protects the kid and the store. It’s also not a playhouse for kids, if all the kids there did that, it would be a huge safety hazard and why should an autistic kid be able to do something dangerous if other kids can’t? I just can’t even understand how this is an argument.
I totally agree with you on your parenting style, just not this specific situation., Never judged. Simply said it's not safe, which is a fact not a judgement.
I would never take the risk with my own child, and simply suggested the same.
No one is being rude or judgemental here, so maybe don't act like it? Autistic individuals are not always the best with typing and conveying emotions. And an autistic individual would know the risks of living in the world with autism., Dude, nsfw can mean anything, but I’m guessing you’re thinking it’s x rated, like sexy times. And to think that a parent can’t view x rated things, well. That says more about you than it does about me to be honest.
But if you actually looked at my comment history you would see I have 2 kids, both with ASD, and comorbid issues, like epilepsy and intellectual disability.
And standing up and announcing to a stranger that your kid has autism is unnecessary. Expecting people to treat your kid differently, except for necessary modifications, is just self centered.
You were letting your kid use a public space for regulation, and just expected then to let you do it. What gives you the right to do that? The ASD? Like, come on.
And if you think someone or agreeing with you, or not babying you makes them a troll, then you’re in for a rude surprise. Not everyone is the same. But let’s face it. Most people are here just to have their own ideas and opinions reinforced, get a pat on the back for their parenting and have a whinge., I get it 100% but let’s be real even if she was right next to her child going up and down (as I’ve done with my son many times) they still would have been kicked out., I’m not sure on that, it’s impossible to say.
I went to a leisure pool with my daughter and she couldn’t climb the stairs to the big slides and there was no other way up so I took her on the smaller sides by putting her on my knee and I was told I wasn’t allowed to do that because I was too big for the slide. That upset me because we were specifically in a place for kids to play at a time that was for families and we were being super careful.
Riding an escalator in a store isn’t the same, I’d like to think if mum was with kid and they were being safe and not causing any disruption, most stores wouldn’t kick them out. However it’s still not a place to go for your kid to play and you definitely can’t sue them for harassment over it.
|
Just been diagnosed
|
I’m having a lot of feelings, I did cry a lot even though I knew that he’d be diagnosed today. I’m not upset that he is autistic, I just fear for his future (making friends, school, working etc)
I’ve already got support and have a list of places and people to call, all the official stuff ya know. But any advice from parents? Is life that much different from a neurotypical kid? I feel like my toddler is so easy, he’s such a happy and content kid. I just have so much to process. Do any of you go to therapy or see psychologists?
|
I felt the same! We did play therapy when my son was 3-4, then ABA from 5-8. Since 8, he’s been in behavioral management & music therapy. It sounds overwhelming & at times, it was/is, but I’ve got a thriving 11 year old. He’s involved in sports, school clubs & the sweetest kid ever. He makes friends so easily because he’s so sincere.
Don’t let the diagnosis get to you—it doesn’t change who your kid is. I worried so much about how he would be misunderstood & that he wouldn’t be able to make friends. My son stims A LOT. Always jumping—especially when excited or anxious. But it’s never been a thing. And he has amazing friends—I always have kids at my house! We worry so much about them, but sometimes, we just have to let them be. You got this., Yes, absolutely find someone for yourself to talk to about this. Preferably an experienced parent hopefully with ASD life experience. Even if it’s just emotional support it still helps to have a safe person to discuss parenting, especially if they have helpful supportive suggestions.
ASD kids are not the same some are chill, some shut down and some completely loose it. (Our child is the type that has meltdowns)., Solidarity! We go Thursday for my 4.5 year olds results. I’ve been really lucky to have a friend with a son just a few days younger than my daughter that knows the ropes, has explained things to me when I was unsure, and has been a great support., I was in the same spot a month ago!, I am autistic myself and I have recently found an autistic psychotherapist, who has an autistic son. I've had therapy before with various levels of success, but the level of understanding I get from this therapist is just amazing. I would totally recommend it. I did not know that the diagnosis would affect me so much - I have known my son was ASD for ages. But, as you described it, it is the whole thing about the future..., The initial gut punch is real, but will subside as you start getting supports and realizing you can set them up to succeed. Apply for medicare (you qualify with diagnosis) and if that is your secondary insurance all supports are completely no cost (not even a copay) we have our LO is in ABA, occupational therapy, speech therapy and music therapy. It sounds like a lot but they are very accommodating and will do telehealth or come to us if my schedule is doesn't allow for it. He's come so far, and went from isolation and melt downs to socializing and calming himself within seconds. Thinking about the future will just cause anxiety, focus on the current and getting the support necessary, and the future will be fine, Definitely recommend Autplay therapy! My son is is 8. He got diagnosed level 1ish/2ish when he was 6. He does speech, occupational therapy, and autplay therapy. The autplay therapy has helped him a ton!, How different life will be compared to NTs will depend on a lot of factors depending on how things unfold, the majority of it being nothing you or any therapist can control. You could eventually be looking at someone who lives independently with an advanced degree making $200K a year or someone who is in diapers at age 30 with a 2:1 in a specialized home for disabled adults and everything in between.
I've been to tons of therapists over the last 20+ years (though I hardly ever discuss my kids) and very few of them have been helpful., Yes the fear kept me awake at nights for months after my child's diagnosis. I do feel that my friends with neurotypical kids have it easy. But our kids need just a little more help. I have heard that the stress ASD moms go through is lot more. The initial stage of fear is common. But do get a psychologist for yourself if you feel the need for help. I dint and regret not doing it., Research MeRT! I wish I knew about it earlier to save up for it earlier but - by son is 5 will be six in a couple of months. They said the younger the better. We started our son’s Magnetic Resonance Therapy. this week. We are going to the Brain Treatment Center. Start ABA asap., Hi,
Nothing to be upset with, this morning he came to me saying that he is scares from monsters, and we watched from the window roaming cars and talked about the building across the street, I said just like your minecraft and it made him giggle...
I sometimes look at him, and think he is so sweet and he could not have been sweeter.
ASD is not a curse, or a disease, or anything that makes him less than any other people.
He does not make friends? You be his friend, he has some difficulties in learning or doing some stuff ? Help him...
You put your time, I will never change my son for anything.
And yes the first 2-3 days hits, but you will overcome.
Keep your chin up and have faith, I’ve definitely learnt a lot more about it in the parent interview today, a lot of things I didn’t notice but they did like the hand movements and things I didn’t consider routines but apparently are routines. I’m joining some local groups for other mothers with autistic children, I don’t know anyone else in the same position, my friends children are all NT so they don’t get how some things aren’t so easy. Thankyou for your comment 🩷, are you australian? we have medicare, we’ve got funding already from the NDIS, he’s already in speech therapy and is on a waitlist for an OT. I’ve seen a lot of recommendations for music therapy so I’ll have to look around., I don’t think ASD is a curse or anything negative, I did say I’m not upset that he is autistic. He’s still the same sweet, funny and happy little dude. I think any parent wants the best future for their child and I’m afraid of not doing the best for him as his needs are a little different to neurotypical children., Ah, no US sorry. Sounds similar though
Obviously we don't have universal, but my employer covers my family. yes he really likes music and recognizes tempo and rhythm even though he doesn't understand how to hit the notes., I know, it is tough, but I guess what you (and I also for myself) can focus is, is your child happy...
My son obviously is not the super star of the class, but he is getting along.
How he will be when he grows up? Well good question, if he will be alone and not able to work, I think going to rural side maybe to a farm with him, ... live in the nature.
But hey, one step after one step... will come tonthat point later
Cheer, I felt the same! We did play therapy when my son was 3-4, then ABA from 5-8. Since 8, he’s been in behavioral management & music therapy. It sounds overwhelming & at times, it was/is, but I’ve got a thriving 11 year old. He’s involved in sports, school clubs & the sweetest kid ever. He makes friends so easily because he’s so sincere.
Don’t let the diagnosis get to you—it doesn’t change who your kid is. I worried so much about how he would be misunderstood & that he wouldn’t be able to make friends. My son stims A LOT. Always jumping—especially when excited or anxious. But it’s never been a thing. And he has amazing friends—I always have kids at my house! We worry so much about them, but sometimes, we just have to let them be. You got this., Yes, absolutely find someone for yourself to talk to about this. Preferably an experienced parent hopefully with ASD life experience. Even if it’s just emotional support it still helps to have a safe person to discuss parenting, especially if they have helpful supportive suggestions.
ASD kids are not the same some are chill, some shut down and some completely loose it. (Our child is the type that has meltdowns)., Solidarity! We go Thursday for my 4.5 year olds results. I’ve been really lucky to have a friend with a son just a few days younger than my daughter that knows the ropes, has explained things to me when I was unsure, and has been a great support., I was in the same spot a month ago!, I am autistic myself and I have recently found an autistic psychotherapist, who has an autistic son. I've had therapy before with various levels of success, but the level of understanding I get from this therapist is just amazing. I would totally recommend it. I did not know that the diagnosis would affect me so much - I have known my son was ASD for ages. But, as you described it, it is the whole thing about the future..., The initial gut punch is real, but will subside as you start getting supports and realizing you can set them up to succeed. Apply for medicare (you qualify with diagnosis) and if that is your secondary insurance all supports are completely no cost (not even a copay) we have our LO is in ABA, occupational therapy, speech therapy and music therapy. It sounds like a lot but they are very accommodating and will do telehealth or come to us if my schedule is doesn't allow for it. He's come so far, and went from isolation and melt downs to socializing and calming himself within seconds. Thinking about the future will just cause anxiety, focus on the current and getting the support necessary, and the future will be fine, Definitely recommend Autplay therapy! My son is is 8. He got diagnosed level 1ish/2ish when he was 6. He does speech, occupational therapy, and autplay therapy. The autplay therapy has helped him a ton!, How different life will be compared to NTs will depend on a lot of factors depending on how things unfold, the majority of it being nothing you or any therapist can control. You could eventually be looking at someone who lives independently with an advanced degree making $200K a year or someone who is in diapers at age 30 with a 2:1 in a specialized home for disabled adults and everything in between.
I've been to tons of therapists over the last 20+ years (though I hardly ever discuss my kids) and very few of them have been helpful., Yes the fear kept me awake at nights for months after my child's diagnosis. I do feel that my friends with neurotypical kids have it easy. But our kids need just a little more help. I have heard that the stress ASD moms go through is lot more. The initial stage of fear is common. But do get a psychologist for yourself if you feel the need for help. I dint and regret not doing it., Research MeRT! I wish I knew about it earlier to save up for it earlier but - by son is 5 will be six in a couple of months. They said the younger the better. We started our son’s Magnetic Resonance Therapy. this week. We are going to the Brain Treatment Center. Start ABA asap., Hi,
Nothing to be upset with, this morning he came to me saying that he is scares from monsters, and we watched from the window roaming cars and talked about the building across the street, I said just like your minecraft and it made him giggle...
I sometimes look at him, and think he is so sweet and he could not have been sweeter.
ASD is not a curse, or a disease, or anything that makes him less than any other people.
He does not make friends? You be his friend, he has some difficulties in learning or doing some stuff ? Help him...
You put your time, I will never change my son for anything.
And yes the first 2-3 days hits, but you will overcome.
Keep your chin up and have faith, I’ve definitely learnt a lot more about it in the parent interview today, a lot of things I didn’t notice but they did like the hand movements and things I didn’t consider routines but apparently are routines. I’m joining some local groups for other mothers with autistic children, I don’t know anyone else in the same position, my friends children are all NT so they don’t get how some things aren’t so easy. Thankyou for your comment 🩷, are you australian? we have medicare, we’ve got funding already from the NDIS, he’s already in speech therapy and is on a waitlist for an OT. I’ve seen a lot of recommendations for music therapy so I’ll have to look around., I don’t think ASD is a curse or anything negative, I did say I’m not upset that he is autistic. He’s still the same sweet, funny and happy little dude. I think any parent wants the best future for their child and I’m afraid of not doing the best for him as his needs are a little different to neurotypical children., Ah, no US sorry. Sounds similar though
Obviously we don't have universal, but my employer covers my family. yes he really likes music and recognizes tempo and rhythm even though he doesn't understand how to hit the notes., I know, it is tough, but I guess what you (and I also for myself) can focus is, is your child happy...
My son obviously is not the super star of the class, but he is getting along.
How he will be when he grows up? Well good question, if he will be alone and not able to work, I think going to rural side maybe to a farm with him, ... live in the nature.
But hey, one step after one step... will come tonthat point later
Cheer, I felt the same! We did play therapy when my son was 3-4, then ABA from 5-8. Since 8, he’s been in behavioral management & music therapy. It sounds overwhelming & at times, it was/is, but I’ve got a thriving 11 year old. He’s involved in sports, school clubs & the sweetest kid ever. He makes friends so easily because he’s so sincere.
Don’t let the diagnosis get to you—it doesn’t change who your kid is. I worried so much about how he would be misunderstood & that he wouldn’t be able to make friends. My son stims A LOT. Always jumping—especially when excited or anxious. But it’s never been a thing. And he has amazing friends—I always have kids at my house! We worry so much about them, but sometimes, we just have to let them be. You got this., Yes, absolutely find someone for yourself to talk to about this. Preferably an experienced parent hopefully with ASD life experience. Even if it’s just emotional support it still helps to have a safe person to discuss parenting, especially if they have helpful supportive suggestions.
ASD kids are not the same some are chill, some shut down and some completely loose it. (Our child is the type that has meltdowns)., Solidarity! We go Thursday for my 4.5 year olds results. I’ve been really lucky to have a friend with a son just a few days younger than my daughter that knows the ropes, has explained things to me when I was unsure, and has been a great support., I was in the same spot a month ago!, I am autistic myself and I have recently found an autistic psychotherapist, who has an autistic son. I've had therapy before with various levels of success, but the level of understanding I get from this therapist is just amazing. I would totally recommend it. I did not know that the diagnosis would affect me so much - I have known my son was ASD for ages. But, as you described it, it is the whole thing about the future..., The initial gut punch is real, but will subside as you start getting supports and realizing you can set them up to succeed. Apply for medicare (you qualify with diagnosis) and if that is your secondary insurance all supports are completely no cost (not even a copay) we have our LO is in ABA, occupational therapy, speech therapy and music therapy. It sounds like a lot but they are very accommodating and will do telehealth or come to us if my schedule is doesn't allow for it. He's come so far, and went from isolation and melt downs to socializing and calming himself within seconds. Thinking about the future will just cause anxiety, focus on the current and getting the support necessary, and the future will be fine, Definitely recommend Autplay therapy! My son is is 8. He got diagnosed level 1ish/2ish when he was 6. He does speech, occupational therapy, and autplay therapy. The autplay therapy has helped him a ton!, How different life will be compared to NTs will depend on a lot of factors depending on how things unfold, the majority of it being nothing you or any therapist can control. You could eventually be looking at someone who lives independently with an advanced degree making $200K a year or someone who is in diapers at age 30 with a 2:1 in a specialized home for disabled adults and everything in between.
I've been to tons of therapists over the last 20+ years (though I hardly ever discuss my kids) and very few of them have been helpful., Yes the fear kept me awake at nights for months after my child's diagnosis. I do feel that my friends with neurotypical kids have it easy. But our kids need just a little more help. I have heard that the stress ASD moms go through is lot more. The initial stage of fear is common. But do get a psychologist for yourself if you feel the need for help. I dint and regret not doing it., Research MeRT! I wish I knew about it earlier to save up for it earlier but - by son is 5 will be six in a couple of months. They said the younger the better. We started our son’s Magnetic Resonance Therapy. this week. We are going to the Brain Treatment Center. Start ABA asap., Hi,
Nothing to be upset with, this morning he came to me saying that he is scares from monsters, and we watched from the window roaming cars and talked about the building across the street, I said just like your minecraft and it made him giggle...
I sometimes look at him, and think he is so sweet and he could not have been sweeter.
ASD is not a curse, or a disease, or anything that makes him less than any other people.
He does not make friends? You be his friend, he has some difficulties in learning or doing some stuff ? Help him...
You put your time, I will never change my son for anything.
And yes the first 2-3 days hits, but you will overcome.
Keep your chin up and have faith, I’ve definitely learnt a lot more about it in the parent interview today, a lot of things I didn’t notice but they did like the hand movements and things I didn’t consider routines but apparently are routines. I’m joining some local groups for other mothers with autistic children, I don’t know anyone else in the same position, my friends children are all NT so they don’t get how some things aren’t so easy. Thankyou for your comment 🩷, are you australian? we have medicare, we’ve got funding already from the NDIS, he’s already in speech therapy and is on a waitlist for an OT. I’ve seen a lot of recommendations for music therapy so I’ll have to look around., I don’t think ASD is a curse or anything negative, I did say I’m not upset that he is autistic. He’s still the same sweet, funny and happy little dude. I think any parent wants the best future for their child and I’m afraid of not doing the best for him as his needs are a little different to neurotypical children., Ah, no US sorry. Sounds similar though
Obviously we don't have universal, but my employer covers my family. yes he really likes music and recognizes tempo and rhythm even though he doesn't understand how to hit the notes., I know, it is tough, but I guess what you (and I also for myself) can focus is, is your child happy...
My son obviously is not the super star of the class, but he is getting along.
How he will be when he grows up? Well good question, if he will be alone and not able to work, I think going to rural side maybe to a farm with him, ... live in the nature.
But hey, one step after one step... will come tonthat point later
Cheer, I felt the same! We did play therapy when my son was 3-4, then ABA from 5-8. Since 8, he’s been in behavioral management & music therapy. It sounds overwhelming & at times, it was/is, but I’ve got a thriving 11 year old. He’s involved in sports, school clubs & the sweetest kid ever. He makes friends so easily because he’s so sincere.
Don’t let the diagnosis get to you—it doesn’t change who your kid is. I worried so much about how he would be misunderstood & that he wouldn’t be able to make friends. My son stims A LOT. Always jumping—especially when excited or anxious. But it’s never been a thing. And he has amazing friends—I always have kids at my house! We worry so much about them, but sometimes, we just have to let them be. You got this., Yes, absolutely find someone for yourself to talk to about this. Preferably an experienced parent hopefully with ASD life experience. Even if it’s just emotional support it still helps to have a safe person to discuss parenting, especially if they have helpful supportive suggestions.
ASD kids are not the same some are chill, some shut down and some completely loose it. (Our child is the type that has meltdowns)., Solidarity! We go Thursday for my 4.5 year olds results. I’ve been really lucky to have a friend with a son just a few days younger than my daughter that knows the ropes, has explained things to me when I was unsure, and has been a great support., I was in the same spot a month ago!, I am autistic myself and I have recently found an autistic psychotherapist, who has an autistic son. I've had therapy before with various levels of success, but the level of understanding I get from this therapist is just amazing. I would totally recommend it. I did not know that the diagnosis would affect me so much - I have known my son was ASD for ages. But, as you described it, it is the whole thing about the future..., The initial gut punch is real, but will subside as you start getting supports and realizing you can set them up to succeed. Apply for medicare (you qualify with diagnosis) and if that is your secondary insurance all supports are completely no cost (not even a copay) we have our LO is in ABA, occupational therapy, speech therapy and music therapy. It sounds like a lot but they are very accommodating and will do telehealth or come to us if my schedule is doesn't allow for it. He's come so far, and went from isolation and melt downs to socializing and calming himself within seconds. Thinking about the future will just cause anxiety, focus on the current and getting the support necessary, and the future will be fine, Definitely recommend Autplay therapy! My son is is 8. He got diagnosed level 1ish/2ish when he was 6. He does speech, occupational therapy, and autplay therapy. The autplay therapy has helped him a ton!, How different life will be compared to NTs will depend on a lot of factors depending on how things unfold, the majority of it being nothing you or any therapist can control. You could eventually be looking at someone who lives independently with an advanced degree making $200K a year or someone who is in diapers at age 30 with a 2:1 in a specialized home for disabled adults and everything in between.
I've been to tons of therapists over the last 20+ years (though I hardly ever discuss my kids) and very few of them have been helpful., Yes the fear kept me awake at nights for months after my child's diagnosis. I do feel that my friends with neurotypical kids have it easy. But our kids need just a little more help. I have heard that the stress ASD moms go through is lot more. The initial stage of fear is common. But do get a psychologist for yourself if you feel the need for help. I dint and regret not doing it., Research MeRT! I wish I knew about it earlier to save up for it earlier but - by son is 5 will be six in a couple of months. They said the younger the better. We started our son’s Magnetic Resonance Therapy. this week. We are going to the Brain Treatment Center. Start ABA asap., Hi,
Nothing to be upset with, this morning he came to me saying that he is scares from monsters, and we watched from the window roaming cars and talked about the building across the street, I said just like your minecraft and it made him giggle...
I sometimes look at him, and think he is so sweet and he could not have been sweeter.
ASD is not a curse, or a disease, or anything that makes him less than any other people.
He does not make friends? You be his friend, he has some difficulties in learning or doing some stuff ? Help him...
You put your time, I will never change my son for anything.
And yes the first 2-3 days hits, but you will overcome.
Keep your chin up and have faith, I’ve definitely learnt a lot more about it in the parent interview today, a lot of things I didn’t notice but they did like the hand movements and things I didn’t consider routines but apparently are routines. I’m joining some local groups for other mothers with autistic children, I don’t know anyone else in the same position, my friends children are all NT so they don’t get how some things aren’t so easy. Thankyou for your comment 🩷, are you australian? we have medicare, we’ve got funding already from the NDIS, he’s already in speech therapy and is on a waitlist for an OT. I’ve seen a lot of recommendations for music therapy so I’ll have to look around., I don’t think ASD is a curse or anything negative, I did say I’m not upset that he is autistic. He’s still the same sweet, funny and happy little dude. I think any parent wants the best future for their child and I’m afraid of not doing the best for him as his needs are a little different to neurotypical children., Ah, no US sorry. Sounds similar though
Obviously we don't have universal, but my employer covers my family. yes he really likes music and recognizes tempo and rhythm even though he doesn't understand how to hit the notes., I know, it is tough, but I guess what you (and I also for myself) can focus is, is your child happy...
My son obviously is not the super star of the class, but he is getting along.
How he will be when he grows up? Well good question, if he will be alone and not able to work, I think going to rural side maybe to a farm with him, ... live in the nature.
But hey, one step after one step... will come tonthat point later
Cheer
|
Just found out...
|
Just found out tonight my son has autism. I don't know where to start getting him the help he needs.
I didn't think he was autistic. I lack any real knowledge about the condition. My husband took our son and had him tested secretly months ago. He sat on the diagnosis and didn't tell me. He didn't tell the school either.
Tonight it really hit me that he should be tested. I quietly mentioned it to my husband after our son went to bed. That's when he told me he already knew.
I'm experiencing so many emotions.
|
The first week after my son’s diagnoses, I called every speech, OT, ABA therapy place. I deep dived into the world. I learned a lot, I’m still learning, I’m not expert. I would say I really leaned into my son, paid more attention and studied his reactions to things. All to navigate this world.
Some days, I feel hope. I survive.
Some days, I am hit with pessimism so hard, my thoughts go so dark…I’m positive I should pack up in the middle of the night and leave. I won’t, but there are hard days.
First step, call therapy places nearby. They do their own assessments usually., Oh hey! Not sure how old your son is or where you live - that will make a big difference.
Ultimately, he’s still your kid. He hasn’t changed - you just know more about him now.
It’s really normal for a lot of people to go through a grief process and feel guilt. Personally I blamed myself for causing her autism and I also blamed myself for not catching it earlier. The logical part of my brain knows neither of those things are true, but that didn’t matter. Id urge you to make the time to process your feelings around it first before diving into finding the help he needs.
And now to contradict myself, I’d also recommend casually starting to look at options for services. Learning about autism and services and funding and insurance and all the things is a lot. I’ve been joking that it’s my part time job. And depending on where you live, you might find long waitlists for referrals and services. This is typical but it’s also frustrating. It might take a while to figure out which therapies might help your son, and then to find the right therapist.
If possible, maybe you can meet with whoever assessed your son for a debrief? Autism is very different from person to person, so knowing more about your son’s diagnosis is important. Typically an autism diagnosis also includes information about someone’s strengths and where they require more support. This person should also be able to give your resources to learn more and find the right supports for your son.
Good luck! You’re not alone, and there’s nothing “wrong” with your son. Like I said, now you just know more about him and you can use that information to ensure he’s supported as he grows., Hey! My son is 3, we got him diagnosed maybe a year ago or a little less. The doctor and some people around us were having concerns and me never being around children I didn’t see anything ‘different’ until he wasn’t talking.
It’s hard to take in, it took me a little bit to come to terms with it, I still have so many questions on what the future brings. But I know one thing for sure, I love him dearly and he saved me so I have no much else to do then to make sure he has the best he can have.
There’s all types of therapies, right now he’s in ‘school’ but it’s at home. Aba denied us but we found another therapy that we are looking into before trying aba again. Do what’s best for your family but remember unless the therapy’s are making your child unhappy it will most likely help them.
There’s benefits, ssi; to help support their needs, children’s wavier program; my son is starting swim lessons through them and had a gym membership through them but they help with so much more. Join Facebook groups, I’ve seen alot more benefits that apparently I didn’t pay attention to 😅.
All depends where you are to though, we are in Wisconsin.
I’m sorry he did that behind your back, but this will help to move forward and it’ll get easier to understand, Its a roller coaster!! All emotions are valid. I was excited, then devastated, then apathetic, then sad, then motivated....... just remember that this changes NOTHING about your son. The diagnosis is a TOOL and not a LABEL. This opens up lots of therapies and ways to help him be healthier and happier. Autism is highly genetic and, now that my son is diagnosed, I'm realizing that my brother is probably autistic. He is 36 never dated or married with major self esteem issues. I wonder if my brother did the social skills work that my son is doing in ABA whether my brother would have had a different life. Early diagnosis is a wonderful thing!!!, Figure out his needs, get him the therapies he needs, if any. Research the condition. Not the end of the world., This scenario is ... strange.
So the school didn't nudge you in that direction? Did he already have an IEP? I'm guessing he is low level and can slip through the cracks easily. Especially if its something your husband simply sat on?
I can't figure out why he'd do that other than getting decision paralysis and not knowing what to do. You'd think you'd still go to your spouse with that though.
How old is he?
Did he ever receive therapies or interventions even without diagnosis?
Depending on his needs I'd start getting him into therapies. That's mostly all we can do. Ask for an IEP meeting with the school. Call ARC if you have a local chapter to get an advocate who might have a little more insight than you in dealing with the school, you're coming in blind and frankly they love walking all over parents., Here's how diagnosis to therapy worked for us:
- at the diagnosis appointment, he was given official diagnosis paperwork and an Rx for ABA therapy
- the diagnosis process also involved meeting with a speech therapist, occupational therapist, and more so you can pursue just those therapies with or without ABA depending on what is right for your kid.
- we decided ABA was right for us and researched therapy centers around us that are in-network with insurance. We called ~4 of them and got on their wait lists). You'll probably need the official diagnosis in-hand before you can be added to the wait lists.
- We got lucky and there was an opening in a month. The most common wait time for ABA we were quoted was 4-8 months. Wait times can vary for ABA, speech, OT, and in-home therapy vs center based therapy.
Step one for you is to ask your husband (or check documents from your insurance company) to identify who diagnosed your son so you can get the official diagnosis information from them as well as their recommendations for therapy options.
Step two is to check what therapy options are in-network for your insurance (check directly with the insurance company, preferably in writing) and call to get on wait lists. Some centers may offer tours that can be nice.
Lastly, keep following up with your kid and his therapists about what is and isn't working for him. ABA has a *history* that isn't good, so you'll want to make sure that positive reinforcement is being used to benefit your child and that your child isn't forced to mask and just be anxious all the time., Look for ESDM therapy -Early School Denver Model, if he’s young. Its not a disorder but that’s what we need to call it to get support. Its a different way of thinking-truly neurodivergent. Get support you all need but don’t make him into “normal”. Help him to stay who he is and give him tools to navigate the world, INFO please!?
How old is your son, is he already in speech or ot or has an IEP through school? How did your husband manage to do this behind your back and did he recieve referrals from the place where your son was diagnosed?
I ask all this to figure how much help your son currently gets or is on wait lists to get and his age for school stuff and if there were signs that professionals like teachers warned your husband to get him tested?, Also, I don’t know how to navigate Reddit but you’re welcome to message me. If you’re in the states I can tell you the steps I took and the places I contacted and you can see if they’re in your area, The first week after my son’s diagnoses, I called every speech, OT, ABA therapy place. I deep dived into the world. I learned a lot, I’m still learning, I’m not expert. I would say I really leaned into my son, paid more attention and studied his reactions to things. All to navigate this world.
Some days, I feel hope. I survive.
Some days, I am hit with pessimism so hard, my thoughts go so dark…I’m positive I should pack up in the middle of the night and leave. I won’t, but there are hard days.
First step, call therapy places nearby. They do their own assessments usually., Oh hey! Not sure how old your son is or where you live - that will make a big difference.
Ultimately, he’s still your kid. He hasn’t changed - you just know more about him now.
It’s really normal for a lot of people to go through a grief process and feel guilt. Personally I blamed myself for causing her autism and I also blamed myself for not catching it earlier. The logical part of my brain knows neither of those things are true, but that didn’t matter. Id urge you to make the time to process your feelings around it first before diving into finding the help he needs.
And now to contradict myself, I’d also recommend casually starting to look at options for services. Learning about autism and services and funding and insurance and all the things is a lot. I’ve been joking that it’s my part time job. And depending on where you live, you might find long waitlists for referrals and services. This is typical but it’s also frustrating. It might take a while to figure out which therapies might help your son, and then to find the right therapist.
If possible, maybe you can meet with whoever assessed your son for a debrief? Autism is very different from person to person, so knowing more about your son’s diagnosis is important. Typically an autism diagnosis also includes information about someone’s strengths and where they require more support. This person should also be able to give your resources to learn more and find the right supports for your son.
Good luck! You’re not alone, and there’s nothing “wrong” with your son. Like I said, now you just know more about him and you can use that information to ensure he’s supported as he grows., Hey! My son is 3, we got him diagnosed maybe a year ago or a little less. The doctor and some people around us were having concerns and me never being around children I didn’t see anything ‘different’ until he wasn’t talking.
It’s hard to take in, it took me a little bit to come to terms with it, I still have so many questions on what the future brings. But I know one thing for sure, I love him dearly and he saved me so I have no much else to do then to make sure he has the best he can have.
There’s all types of therapies, right now he’s in ‘school’ but it’s at home. Aba denied us but we found another therapy that we are looking into before trying aba again. Do what’s best for your family but remember unless the therapy’s are making your child unhappy it will most likely help them.
There’s benefits, ssi; to help support their needs, children’s wavier program; my son is starting swim lessons through them and had a gym membership through them but they help with so much more. Join Facebook groups, I’ve seen alot more benefits that apparently I didn’t pay attention to 😅.
All depends where you are to though, we are in Wisconsin.
I’m sorry he did that behind your back, but this will help to move forward and it’ll get easier to understand, Its a roller coaster!! All emotions are valid. I was excited, then devastated, then apathetic, then sad, then motivated....... just remember that this changes NOTHING about your son. The diagnosis is a TOOL and not a LABEL. This opens up lots of therapies and ways to help him be healthier and happier. Autism is highly genetic and, now that my son is diagnosed, I'm realizing that my brother is probably autistic. He is 36 never dated or married with major self esteem issues. I wonder if my brother did the social skills work that my son is doing in ABA whether my brother would have had a different life. Early diagnosis is a wonderful thing!!!, Figure out his needs, get him the therapies he needs, if any. Research the condition. Not the end of the world., This scenario is ... strange.
So the school didn't nudge you in that direction? Did he already have an IEP? I'm guessing he is low level and can slip through the cracks easily. Especially if its something your husband simply sat on?
I can't figure out why he'd do that other than getting decision paralysis and not knowing what to do. You'd think you'd still go to your spouse with that though.
How old is he?
Did he ever receive therapies or interventions even without diagnosis?
Depending on his needs I'd start getting him into therapies. That's mostly all we can do. Ask for an IEP meeting with the school. Call ARC if you have a local chapter to get an advocate who might have a little more insight than you in dealing with the school, you're coming in blind and frankly they love walking all over parents., Here's how diagnosis to therapy worked for us:
- at the diagnosis appointment, he was given official diagnosis paperwork and an Rx for ABA therapy
- the diagnosis process also involved meeting with a speech therapist, occupational therapist, and more so you can pursue just those therapies with or without ABA depending on what is right for your kid.
- we decided ABA was right for us and researched therapy centers around us that are in-network with insurance. We called ~4 of them and got on their wait lists). You'll probably need the official diagnosis in-hand before you can be added to the wait lists.
- We got lucky and there was an opening in a month. The most common wait time for ABA we were quoted was 4-8 months. Wait times can vary for ABA, speech, OT, and in-home therapy vs center based therapy.
Step one for you is to ask your husband (or check documents from your insurance company) to identify who diagnosed your son so you can get the official diagnosis information from them as well as their recommendations for therapy options.
Step two is to check what therapy options are in-network for your insurance (check directly with the insurance company, preferably in writing) and call to get on wait lists. Some centers may offer tours that can be nice.
Lastly, keep following up with your kid and his therapists about what is and isn't working for him. ABA has a *history* that isn't good, so you'll want to make sure that positive reinforcement is being used to benefit your child and that your child isn't forced to mask and just be anxious all the time., Look for ESDM therapy -Early School Denver Model, if he’s young. Its not a disorder but that’s what we need to call it to get support. Its a different way of thinking-truly neurodivergent. Get support you all need but don’t make him into “normal”. Help him to stay who he is and give him tools to navigate the world, INFO please!?
How old is your son, is he already in speech or ot or has an IEP through school? How did your husband manage to do this behind your back and did he recieve referrals from the place where your son was diagnosed?
I ask all this to figure how much help your son currently gets or is on wait lists to get and his age for school stuff and if there were signs that professionals like teachers warned your husband to get him tested?, Also, I don’t know how to navigate Reddit but you’re welcome to message me. If you’re in the states I can tell you the steps I took and the places I contacted and you can see if they’re in your area, The first week after my son’s diagnoses, I called every speech, OT, ABA therapy place. I deep dived into the world. I learned a lot, I’m still learning, I’m not expert. I would say I really leaned into my son, paid more attention and studied his reactions to things. All to navigate this world.
Some days, I feel hope. I survive.
Some days, I am hit with pessimism so hard, my thoughts go so dark…I’m positive I should pack up in the middle of the night and leave. I won’t, but there are hard days.
First step, call therapy places nearby. They do their own assessments usually., Oh hey! Not sure how old your son is or where you live - that will make a big difference.
Ultimately, he’s still your kid. He hasn’t changed - you just know more about him now.
It’s really normal for a lot of people to go through a grief process and feel guilt. Personally I blamed myself for causing her autism and I also blamed myself for not catching it earlier. The logical part of my brain knows neither of those things are true, but that didn’t matter. Id urge you to make the time to process your feelings around it first before diving into finding the help he needs.
And now to contradict myself, I’d also recommend casually starting to look at options for services. Learning about autism and services and funding and insurance and all the things is a lot. I’ve been joking that it’s my part time job. And depending on where you live, you might find long waitlists for referrals and services. This is typical but it’s also frustrating. It might take a while to figure out which therapies might help your son, and then to find the right therapist.
If possible, maybe you can meet with whoever assessed your son for a debrief? Autism is very different from person to person, so knowing more about your son’s diagnosis is important. Typically an autism diagnosis also includes information about someone’s strengths and where they require more support. This person should also be able to give your resources to learn more and find the right supports for your son.
Good luck! You’re not alone, and there’s nothing “wrong” with your son. Like I said, now you just know more about him and you can use that information to ensure he’s supported as he grows., Hey! My son is 3, we got him diagnosed maybe a year ago or a little less. The doctor and some people around us were having concerns and me never being around children I didn’t see anything ‘different’ until he wasn’t talking.
It’s hard to take in, it took me a little bit to come to terms with it, I still have so many questions on what the future brings. But I know one thing for sure, I love him dearly and he saved me so I have no much else to do then to make sure he has the best he can have.
There’s all types of therapies, right now he’s in ‘school’ but it’s at home. Aba denied us but we found another therapy that we are looking into before trying aba again. Do what’s best for your family but remember unless the therapy’s are making your child unhappy it will most likely help them.
There’s benefits, ssi; to help support their needs, children’s wavier program; my son is starting swim lessons through them and had a gym membership through them but they help with so much more. Join Facebook groups, I’ve seen alot more benefits that apparently I didn’t pay attention to 😅.
All depends where you are to though, we are in Wisconsin.
I’m sorry he did that behind your back, but this will help to move forward and it’ll get easier to understand, Its a roller coaster!! All emotions are valid. I was excited, then devastated, then apathetic, then sad, then motivated....... just remember that this changes NOTHING about your son. The diagnosis is a TOOL and not a LABEL. This opens up lots of therapies and ways to help him be healthier and happier. Autism is highly genetic and, now that my son is diagnosed, I'm realizing that my brother is probably autistic. He is 36 never dated or married with major self esteem issues. I wonder if my brother did the social skills work that my son is doing in ABA whether my brother would have had a different life. Early diagnosis is a wonderful thing!!!, Figure out his needs, get him the therapies he needs, if any. Research the condition. Not the end of the world., This scenario is ... strange.
So the school didn't nudge you in that direction? Did he already have an IEP? I'm guessing he is low level and can slip through the cracks easily. Especially if its something your husband simply sat on?
I can't figure out why he'd do that other than getting decision paralysis and not knowing what to do. You'd think you'd still go to your spouse with that though.
How old is he?
Did he ever receive therapies or interventions even without diagnosis?
Depending on his needs I'd start getting him into therapies. That's mostly all we can do. Ask for an IEP meeting with the school. Call ARC if you have a local chapter to get an advocate who might have a little more insight than you in dealing with the school, you're coming in blind and frankly they love walking all over parents., Here's how diagnosis to therapy worked for us:
- at the diagnosis appointment, he was given official diagnosis paperwork and an Rx for ABA therapy
- the diagnosis process also involved meeting with a speech therapist, occupational therapist, and more so you can pursue just those therapies with or without ABA depending on what is right for your kid.
- we decided ABA was right for us and researched therapy centers around us that are in-network with insurance. We called ~4 of them and got on their wait lists). You'll probably need the official diagnosis in-hand before you can be added to the wait lists.
- We got lucky and there was an opening in a month. The most common wait time for ABA we were quoted was 4-8 months. Wait times can vary for ABA, speech, OT, and in-home therapy vs center based therapy.
Step one for you is to ask your husband (or check documents from your insurance company) to identify who diagnosed your son so you can get the official diagnosis information from them as well as their recommendations for therapy options.
Step two is to check what therapy options are in-network for your insurance (check directly with the insurance company, preferably in writing) and call to get on wait lists. Some centers may offer tours that can be nice.
Lastly, keep following up with your kid and his therapists about what is and isn't working for him. ABA has a *history* that isn't good, so you'll want to make sure that positive reinforcement is being used to benefit your child and that your child isn't forced to mask and just be anxious all the time., Look for ESDM therapy -Early School Denver Model, if he’s young. Its not a disorder but that’s what we need to call it to get support. Its a different way of thinking-truly neurodivergent. Get support you all need but don’t make him into “normal”. Help him to stay who he is and give him tools to navigate the world, INFO please!?
How old is your son, is he already in speech or ot or has an IEP through school? How did your husband manage to do this behind your back and did he recieve referrals from the place where your son was diagnosed?
I ask all this to figure how much help your son currently gets or is on wait lists to get and his age for school stuff and if there were signs that professionals like teachers warned your husband to get him tested?, Also, I don’t know how to navigate Reddit but you’re welcome to message me. If you’re in the states I can tell you the steps I took and the places I contacted and you can see if they’re in your area, The first week after my son’s diagnoses, I called every speech, OT, ABA therapy place. I deep dived into the world. I learned a lot, I’m still learning, I’m not expert. I would say I really leaned into my son, paid more attention and studied his reactions to things. All to navigate this world.
Some days, I feel hope. I survive.
Some days, I am hit with pessimism so hard, my thoughts go so dark…I’m positive I should pack up in the middle of the night and leave. I won’t, but there are hard days.
First step, call therapy places nearby. They do their own assessments usually., Oh hey! Not sure how old your son is or where you live - that will make a big difference.
Ultimately, he’s still your kid. He hasn’t changed - you just know more about him now.
It’s really normal for a lot of people to go through a grief process and feel guilt. Personally I blamed myself for causing her autism and I also blamed myself for not catching it earlier. The logical part of my brain knows neither of those things are true, but that didn’t matter. Id urge you to make the time to process your feelings around it first before diving into finding the help he needs.
And now to contradict myself, I’d also recommend casually starting to look at options for services. Learning about autism and services and funding and insurance and all the things is a lot. I’ve been joking that it’s my part time job. And depending on where you live, you might find long waitlists for referrals and services. This is typical but it’s also frustrating. It might take a while to figure out which therapies might help your son, and then to find the right therapist.
If possible, maybe you can meet with whoever assessed your son for a debrief? Autism is very different from person to person, so knowing more about your son’s diagnosis is important. Typically an autism diagnosis also includes information about someone’s strengths and where they require more support. This person should also be able to give your resources to learn more and find the right supports for your son.
Good luck! You’re not alone, and there’s nothing “wrong” with your son. Like I said, now you just know more about him and you can use that information to ensure he’s supported as he grows., Hey! My son is 3, we got him diagnosed maybe a year ago or a little less. The doctor and some people around us were having concerns and me never being around children I didn’t see anything ‘different’ until he wasn’t talking.
It’s hard to take in, it took me a little bit to come to terms with it, I still have so many questions on what the future brings. But I know one thing for sure, I love him dearly and he saved me so I have no much else to do then to make sure he has the best he can have.
There’s all types of therapies, right now he’s in ‘school’ but it’s at home. Aba denied us but we found another therapy that we are looking into before trying aba again. Do what’s best for your family but remember unless the therapy’s are making your child unhappy it will most likely help them.
There’s benefits, ssi; to help support their needs, children’s wavier program; my son is starting swim lessons through them and had a gym membership through them but they help with so much more. Join Facebook groups, I’ve seen alot more benefits that apparently I didn’t pay attention to 😅.
All depends where you are to though, we are in Wisconsin.
I’m sorry he did that behind your back, but this will help to move forward and it’ll get easier to understand, Its a roller coaster!! All emotions are valid. I was excited, then devastated, then apathetic, then sad, then motivated....... just remember that this changes NOTHING about your son. The diagnosis is a TOOL and not a LABEL. This opens up lots of therapies and ways to help him be healthier and happier. Autism is highly genetic and, now that my son is diagnosed, I'm realizing that my brother is probably autistic. He is 36 never dated or married with major self esteem issues. I wonder if my brother did the social skills work that my son is doing in ABA whether my brother would have had a different life. Early diagnosis is a wonderful thing!!!, Figure out his needs, get him the therapies he needs, if any. Research the condition. Not the end of the world., This scenario is ... strange.
So the school didn't nudge you in that direction? Did he already have an IEP? I'm guessing he is low level and can slip through the cracks easily. Especially if its something your husband simply sat on?
I can't figure out why he'd do that other than getting decision paralysis and not knowing what to do. You'd think you'd still go to your spouse with that though.
How old is he?
Did he ever receive therapies or interventions even without diagnosis?
Depending on his needs I'd start getting him into therapies. That's mostly all we can do. Ask for an IEP meeting with the school. Call ARC if you have a local chapter to get an advocate who might have a little more insight than you in dealing with the school, you're coming in blind and frankly they love walking all over parents., Here's how diagnosis to therapy worked for us:
- at the diagnosis appointment, he was given official diagnosis paperwork and an Rx for ABA therapy
- the diagnosis process also involved meeting with a speech therapist, occupational therapist, and more so you can pursue just those therapies with or without ABA depending on what is right for your kid.
- we decided ABA was right for us and researched therapy centers around us that are in-network with insurance. We called ~4 of them and got on their wait lists). You'll probably need the official diagnosis in-hand before you can be added to the wait lists.
- We got lucky and there was an opening in a month. The most common wait time for ABA we were quoted was 4-8 months. Wait times can vary for ABA, speech, OT, and in-home therapy vs center based therapy.
Step one for you is to ask your husband (or check documents from your insurance company) to identify who diagnosed your son so you can get the official diagnosis information from them as well as their recommendations for therapy options.
Step two is to check what therapy options are in-network for your insurance (check directly with the insurance company, preferably in writing) and call to get on wait lists. Some centers may offer tours that can be nice.
Lastly, keep following up with your kid and his therapists about what is and isn't working for him. ABA has a *history* that isn't good, so you'll want to make sure that positive reinforcement is being used to benefit your child and that your child isn't forced to mask and just be anxious all the time., Look for ESDM therapy -Early School Denver Model, if he’s young. Its not a disorder but that’s what we need to call it to get support. Its a different way of thinking-truly neurodivergent. Get support you all need but don’t make him into “normal”. Help him to stay who he is and give him tools to navigate the world, INFO please!?
How old is your son, is he already in speech or ot or has an IEP through school? How did your husband manage to do this behind your back and did he recieve referrals from the place where your son was diagnosed?
I ask all this to figure how much help your son currently gets or is on wait lists to get and his age for school stuff and if there were signs that professionals like teachers warned your husband to get him tested?, Also, I don’t know how to navigate Reddit but you’re welcome to message me. If you’re in the states I can tell you the steps I took and the places I contacted and you can see if they’re in your area
|
Just gonna be honest, I miss my old life.
|
My 3yo has level 3 autism, likely with ID. He is completely non verbal but learning to use a device.
He is a sweetheart, and I truly love him so much. But it kind of hurts how much I miss my old life. I remember how happy and excited I used to feel on a daily basis. I was always so excited to get off work and make dinner for my bf (now husband) and spend time together playing games or watching movies. We hung out with friends all weekend, went places, or just chilled at home.
I woke up happy to start my day and excited for spending time with loved ones and friends.
I don’t feel that way anymore. The first year of my sons life, I was very happy. But over the last 1.5 years my happiness has disappeared. As he gets older, his behaviors get more intense, our social circle gets smaller and smaller, we are not able to go to more and more places, and any free time or time with my husband becomes more scarce.
Spending all day with him is hard. He doesn’t really interact with me no matter what I try and just whines for candy or to open and close the screen door all day. It’s been that way for a year with very little change. Despite all the therapies, there is very little progress. If anything, he’s regressed.
I don’t like going places anymore as it’s really hard to be around other little kids, and keeping him safe is a 24/7 constant job. Even being at home with him is non stop chasing him around getting stuff out of his mouth or grabbing him off whatever he’s climbed. I dread getting off work and picking him up. At least when I’m working I can listen to podcasts and sit down.
Knowing that this is my life forever has fucked me up in the head. I don’t look forward to the future anymore and just wonder how long I can take this. Having a child is supposed to be this incredible but hard thing, and I feel like I just got the hard part.
My husband on the other hand has totally embraced it and has never once complained about our sons meltdowns or us being caregivers for life.
He wants more kids, and I know he would 100% take on equal or more parenting, as he already takes on an equal parenting role. I want to give him his dream, and I would like a child that I can speak and interact with one day, but I just don’t know if it’s fair to bring a child into this home when I am so unhappy and we have a child with such high support needs.
It’s about to be my bday and my sons bday, we’re going on vacation to Disney. It should be a magical time but I know it’s just gonna be him having 0 reaction to anything other than some random brick on the wall or the pool. I don’t feel the magic in life anymore..what I would give to go back to my old life for just a few days…just needed to vent.
|
I could have written this post a year ago. You aren’t alone. Trying to find joy in the simplicity of life, similar to how our children do. We went to a petting zoo recently and the thing that my kids were most excited by was the outdoor sink., My coping strategy was just not to think too far ahead. Several years ago when he was first diagnosed, I was too focused on all the things he wouldn’t be able to do and, selfishly, all the things I wouldn’t be able to do. Fast forward to now and a lot of the things I was worried about weren’t as bad as I imagined. In many ways, he is able to do things I didn’t think possible. Still have ways to go of course. My wife and I were avid globetrotters prior to his diagnosis and haven’t flown since. We will cross that bridge when we get there. But taking it all in the short term has made it much more manageable. One day at a time., You need to make sure that you account for your mental health. It is always going to the most important thing. Taking care of these kiddos is definitely a challenge. And if you start falling more and more, it's going to get even harder to keep yourself motivated and pushing forward. You have to look out what's best for you, because if you're not happy and you're struggling, it's going to be even harder for you to help and be there for those around you., We could be the same person. Just an hour ago my husband was talking about taking my son out tommorow to some Local truck mud races. I said have fun! He can handle all the things I can’t, like being out in public. I gave that up a few years ago. My son is 7 and in full time aba. Right now it is absolutly the best place for him and I will have so many bittersweet feeling when he’s done there.
The way that I’ve been able to survive is that I know eventually insurance will stop paying for aba and I’ll have to put him in public school, at that point I’m going to get a job as a para. It’s no money but it’s health benefits (which currently cost us in the range of 30k a year) and adult and brain stimulation and a life outside of care giving it only for a few hours. When he ages out of school I will hire somebody to watch him during the day so I can continue to work. Later on he will be in a home. I don’t know what that will look like but he will transition while we’re alive. I want to use the funds from my job to fund an ira to be put in a trust for him. These are the things that I plan and tell myself to get through everyday. I am also on anti depressants but have that exact same feeling that my happiness is temporary and I have to go back to my life eventually., The chance that I could have another ND child, possibly a much higher support needs ND child, has stopped me from wanting to have another child. It hurts my husband but my mental health is hanging on by such a tiny thread, I just can't take the risk. I'm privileged that my child is spicy and has aged me by at least 10 years from the stress BUT I have no doubt she will be able to live independently as an adult and I don't have to worry about what will happen to her when me and my husband are gone eventually. A second child could be a naturally chill, laid back NT kid, orrrrr they could be a super high support needs ND child and I would probably opt out of living at that point and that's not fair to anyone involved. Kids need healthy alive parents more than they need siblings., I could have written this a year and a half ago. I was already on the fence about kids and then this happened. I gave up the business i had built from the ground up to be a SAHM, something i had vehemently said i would never do. I felt like I torpedoed my life to be consumed by fear, and isolated at home, unable
to engage in my passions or create anymore. I sacrificed my body, my career, and took on a role I didn’t want, and on top of that I was straight up not having a good time. Couldn’t take my son anywhere without screaming and violence ensuing, plus Covid still had things extra jacked up.
My son has grown a lot in that time, and is more interactive now. His language is still severely delayed but he is partially verbal, and his aggression/eloping has improved with therapy and time. Having a second child that doesn’t have the same high support needs (she seems NT so far) has been amazing for my son, and given me the opportunity to experience more of what I expected parenting to be. I also appreciate more about my son in comparison with some of the things that are tough with my NT child. I don’t know how I would have coped with 2 high support needs (i would have struggled hard emotionally I think), and I had a traumatic birth so we likely won’t try again. We have a lot of family support and I’ve made close friends with another mom of high support needs. Having community really pulled me up from the bottom of the ocean. I try to just take things day by day, sometimes just hour by hour. Making a friend who has a child who may also never live independently has helped because I now have the hope they could live together with a carer to have some semblance of companionship and independence., Not gonna lie. It sucks. I have a 7 year old non speaking daughter. It does not get easier. But YOU get stronger., I understand and really hope for the best with your situation. It is hard to talk about it because everyone then just assumes your frustration means you don't love your child. My daughter was non-verbal and often could be highly aggressive. The school would often look for reasons to send her home and try to convince my wife and I to institutionalize her. We stuck with it and kept fighting. Unfortunately last year she passed any due to complications from a seizure. Now every day I wish I hear her happy squeal or even her angry scream. But don't forget that you ate human and your frustration is normal. Taking care of yourself is important for you and your family., I feel this way a lot of the time, Like a hurt/numb. I’m actually a SAHD I gave up my career for my wife to pursue her’s so now I only work a few evenings a week. My wife and I had our first child very young and the oldest is NT we got to enjoy and experience a lot of things the average family gets to do. Boy did I take it for granted..
Our youngest at 1 completely regressed then was diagnosis with the worst level, He’s almost 5 non verbal, Sounds very similar to your child. Everything in the mouth and climbs on everything also constantly making messes and always have to worry about his safety. But he generally is happy when he’s not having meltdowns. I will say he has improved some even if it’s a little.
Early invention through the school system has helped him like I said he hasn’t made a ton of progress but it’s progress they say ages 2-5 years old are pretty rough. Try to hang in there we’re here for you!
Edit : Worth mentioning you can get genetics testing done to see if it’s Genetic. However my family is an example of no one having it on either side and all the tests came back negative for genetics so our son just has it by chance.., To address the second child issue, I would push for genetic testing first to see if anything comes up. There are dozens of rare genetic duplications or deletions on chromosomes that can cause problems. Some are inherited but some are just chance.
I feel you, it is very difficult thinking things will never improve. But he’s only 3, lots of autistic kids don’t start speaking and interacting until 4-6, so don’t throw in the towel just yet. If his therapies aren’t helping, change them. Maybe therapists aren’t a good fit., I am feeling this 100%. The first year I realized my son was probably autistic, I honestly struggled to live. I'd wake up and the instant I was conscious, this huge weight of "oh, my child is ND" would pull me down into a dark pit, and I despaired that this was going to be every morning of my life. I thought I would never be happy again. It was like all the color went out of my life and I couldn't see into the future at all. I had no idea how I was supposed to live that way. So you're not alone, and I'm sorry you're having such a rough time right now., I can definitely relate to this. While I still don't like going out with him to most places, I have to say since he turned 4, I've been generally enjoying spending time with him a lot more (he'll be 5 in a month). He's starting to have a vocabulary now, only of about 10-20 words but it's significant progress when he used those words correctly: at 3, he occasionally had a "word of the month" and wouldn't use any other words (like he'd be obsessed with the word blue, then he'd learn the word ball and never say blue again) and it did feel like he was regressing as he used to count to 10 at 2 but completely stopped until he was about 4 and a half, now he can count to 20. He also potty trained at 4.5; he still has the odd accident if we're out as he can't tell us when he needs the toilet but if we're at home, he consistently poos and wees in the potty (and even empties his own potty into the toilet) which has been a huge boon to my happiness because he'd often take his nappy off when it was poopy and get poop everywhere: not having to deal with poopy nappies has made life a lot better.
It does get better! Hold onto that.,
Your feelings are totally valid and my heart goes out to you.
There is a famous filmmaker in Australia ( Jocelyn Moorhouse ) that has two autistic children as well as two NT children.
YouTube : How filmmaker parents learnt to love autism Australian Story
Filmmakers Jocelyn Moorhouse and PJ Hogan juggle movies and having children with autism https://amp.abc.net.au/article/10950760.
You’re not alone 💜, Reading this makes me tear up. I feel exactly the same. I used to be happy, now I am exhausted, sad, and overall numb since having our twins in general, but also the daily task for our autistic severely disabled twin., My son is now 27. When he was 3 he was a lot like yours…no language, behaviors. He was a big eloper…once escaped out a window naked and ran down the street. I know it’s hard to find joy right now. Keep going with therapy and exposing him to as much as you can. Keep your marriage strong and find time to do some couple things. There will be ups and downs but hopefully the overall trend will be up. My son still has his struggles but has improved so much over the years. An old teacher of his once said “you don’t know how far a frog will jump when he’s still a tadpole” We are here for you!, The kid he is at three is not the kid he’s going to be at 4, or 7, or at 28. I know it all looks like a swirling eddy of despair right now but do try and keep that in mind., I feel this so much. Also I hate that venting about this is nearly impossible since you're just gonna get blamed and judged by society for it. So it's easy to spiral into situations where all of your frustrations and anger are internalising, atleast that's happening to me.
My son isn't non-verbal but he is diagnosed with ADHD and we're in the process of getting an autism diagnosis rn, which I suspect will be positive. He's already 10 but he's definitely not easy to get along with. He's very focused on his own boundaries and feelings and keeps dismissing other's boundaries quickly and often if he feels like it. Also he's showing some narcissistic behaviours like guilt tripping others if they don't put up with him being selfish or mean.
And he needs a lot of help and assistance with daily tasks, which often gets rewarded with provocative phrases like "seems like you're my maid now".
He's good at finding 'friends' quickly, but always also quickly loses them to his behaviour.
It's really really rough sometimes and I'm soooo tired of all the fighting, but if I stop defending myself his behaviour immediately gets worse. We're looking for a therapist atm but open spots are rare.
I've always struggled with depression and anxiety myself but to be honest I've never been so sad and lonely like I've been lately. I managed to cut off a narcissistic parent after years of abuse in my childhood and youth, so his behaviour is a huge trigger sometimes and I'm so so so terribly afraid he inherited narcissism from my parent. I REALLY hope that's not the case and he's just difficult due to his age right now. But everything is so emotionally draining, I'm barely hanging on.
On top of that I'm so burned out, I can't even hold a job and my husbands money is barely enough to afford living. I just want to cry. And I just spent 3 years in therapy without solving it because there's no solution except pushing through, getting therapy for him and hoping it gets better.
Sorry for over sharing, I think I just needed to vent too after reading your post and also sharing there's other mom's feeling this way. Maybe it helps knowing you're not alone and that you're allowed to feel burned out, exhausted and sad. It IS absolutely exhausting. I hope you feel atleast somewhat proud of yourself for pushing through this. Because you should., I hear you. My MD prescribed me antidepressants. It took a bit of fiddling to find one that fit my body/brain chemistry, but I am so grateful that I reached out and got help. Life is better now., Man I could’ve written this post! I grieve for my younger days all the time, which sucks because I don’t want to waste the rest of my life longing for the past!
My kid is a LOT like yours and dealing with him all day or even for a few hours is exhausting! I also try and interact with him, but he stims constantly and that makes it tough. My house also has vomit and spit everywhere from him compulsively regurgitating and spitting, which I absolutely hate and resent. He also wrecked his baby teeth regurgitating.
We’ve spoken to tons of professionals, bought him all the things, get respite, but I am still struggling mental health wise as I long for a better relationship with my kid and to be able to connect with him more., Honestly I think we all feel like this at times. We love them with every ounce of our beings but its also incredibly tough. They get to the ages where its typically supposed to get easier and it doesnt really get easier for us as theyre not typical in behaviour. Ive recently had to take a career break even though my nearly 5 yr old is in full time school as I need that time when hes at school to advocate for support for him and keep our lives organised. It has helped in the sense that I have that quiet uninterupted time in the day and can fit in some fun time for myself. I appreciate this is a very priveleged position to be in though., I could have written your post. I have a 9 year old at about the same level of autism as well and it's so hard... Every day, day after day. On repeat 24/7/365. Ground hog day! I've been in some pretty dark places over the years but the past few months things have turned around for us. We were able to get an out of district placement so he goes to an autism school 5 days a week. We also now have wrap around ABA coverage weeknights nights (4-730p) and weekend clinic hours (9a-4p). All covered by insurance.
Initially I felt a tremendous amount of "parent" guilt bc that seems like a lot of time but it completely changed our dynamic. We finally have HELP! No one was stepping up and helping so my wife and I were totally exhausted and burnt out. Now we have mental breaks, can focus on ourselves a bit more and have additional patience to deal with the daily grind. Also, he loves his BT and clinic time on the weekends. He's shown improvements in many areas and is even connecting with one of the other kids in clinic something I never expected.
For my own state of mind. I've recently started therapy and now that I have time started to reach out to friends to reconnect. It's made a huge difference for me. I also try to live in the moment more and enjoy today. I'm sure you've read the story about raising a child with disabilities... We expected Italy but landed in Holland. If not Google it. Tulips and windmills are really beautiful too!
I hope this helps! I never comment but I really connected with your post. Just know, it gets a bit easier!, My son was diagnosed with classic autism at 3.
Non verbal, no eye contact, we thought he was deaf as he did not respond to his name.
He would strip his crib and clothes off. He bang his head. Early intervention at school was a class with kids with all kinds of disabilities, when he had tantrums they put him in cardboard box to calm down.
One day he pulled a little girl’s hair in the playground
We thought he would be expelled. The the school called an ABA agency and things changed.
At 5 while working with ABA aide, my husband came home from work my son looked up and said “Dada, why you home?”
We realized ABA was therapy that worked for our son.
We obtained as much as we could get. I quit my job and researched as much as I could, I signed him up for studies at universities.
We had him privately evaluated by clinical psychologists who wrote recommendations on what he needed. Our job as parents became to focus on what he needed and get it funded through school, heath care plan, non profit and any gov agency that could help.
We lost some friends but we made new ones that understood. School districts hated it us, schools look at budget year to year, as parents we are vested for life.
God gave you this child for a reason. You are the advocate for him/her.
My son is now 22 attending a university and living in the dorms.
There is hope our kids can learn they just do it differently.
“If they don’t learn the way we teach, then we teach the way they learn”. - Ivar Lovass, Just wanted to say that you’re not alone ❤️
I find myself wishing for the same. I want to feel like me again & not have this constant stress. I will say that as my son gets older, it gets easier in some ways. At 3 he couldn’t talk, walk or be around other children. Now he is a different kid and is beginning to have interests. I know it’s probably been said before but try to find happiness & joy in the simpler things, and don’t set expectations. And in case nobody’s told you lately, you’re doing a great job! ❤️, I have to admit reading this post absolutely shattered my heart. Im not here to shame you or even change your mind. I have a 2 and a half year old non verbal autistic son. Of course it’s hard, mama. Maybe slow down for a minute and try to put yourself in your babies shoes. That random open and shutting of the screen door? Try to find other activities baby can do with you that involve a repetitive action like that. Whine for candy? Autistic children are so very very picky with their food. Maybe try other sweet things like fruit, or peanut butter and Nutella sandwiches. That random brick your baby might get excited over? Find the beauty in that brick, share your babies excitement. One thing I’ve learned with my son is I may not not why he’s so exited at the time, or why that one random brick is so exciting but when I mirror his excitement, his reactions that little boy lights up almost like “hey, somebody understands me” i feel you’re getting too caught up in the whys and are having a hard time finding logic in your kiddos behavior when in fact just go with it. Be excited with your kiddo, be sad with your kiddo, try to just connect and not try so hard to understand. Like I said I’m not here to shame at all, I’m just trying to show you the beauty of autism, the uniqueness. It’s hard, I know. But it can be absolutely rewarding. Hang in there mama, it’ll be ok., There's a reason some state will fund what is called respite care for the parents. Having a child with level 2 and level 3 is one of the hardest things as a parent. People who don't have a child with asd will never understand and will judge.
There's nothing that any of us can say. The only thing that can help is getting a bigger support network. Having other moms with asd kids to help each other. Going to a church where even an hour they can go to a nursury.. Anything that can give you moments where you are a person again will help you., sometimes its good to vent.
It sounds like you may be feeling alone or wanting or have a growing deep desire to separate from being married. Then you also want to reverse his diagnosis which is a little hard to explain or take back., Whether you believe or not
You still have a child to raise
You can rage and scream but it does not change anything
We should support each other and share information
Not knock others down, Just be careful; you’re very likely to have another child on the spectrum because of the severity of this one. Maybe it’s better to adopt an older child ? Past 3 so you know if they are on the spectrum., I totally understand how you feel, my son is similar. Even the screen door opening and closing all day and taking stuff out of his mouth. He is in so much therapy with little progress., Does he have therapy? Pre K?, Raising kids are tough. Raising an autistic child is extremely tough times 2. You didn't mention what type of therapy your child was receiving. From the sounds of it you need a really good **at home** ABA program to work on the meltdown and encourage speech. They will be able to help you address a lot of other issues that you aren't even thinking about. 3 years old is very young. If you want your life back get a good therapy program now. Document problems and don't let them push some crappy combo program on you., I can feel you. Though my older son is verbal, he is usually out of context when he speaks. There are so many used to be-s in my life I cannot count.
We had a second child before our first was diagnosed. I am biting my nails off if he is on the spectrum or not. If I could go back, I would not have a second.
I am spending a ton of money on my older son's development.
When it is unbearable, I focus on positive things in my future. An Appointment with my therapist. A private afternoon with my wife, where we go out leaving the kids to my parents. A beer I drink when kids fall asleep.
An ice cream on the way home from work. Anything small really that keeps me going on day to day. And I hold out hope life one day will be better., I'm here right now.. I love my little man more than anything... but the struggle I feel everyday is killing me and its caused my health to take a massive dive, My 8 year old Son has level 3 ASD. He's non-verbal, still in pull-ups, has a meltdown here and there, etc. While I can't say I have ever been generally unhappy due to his condition, I HAVE worried about his future. A LOT. Unfortunately it just is what it is. Try to expand his horizons and experience new things with him. Yes, it will be difficult at times. Try to remember that as inconvenient and difficult this situation is for you, it's MUCH worse for him. Your child needs you. That is simply all there is to it. He needs you to rise to the occasion. As he gets older I am more than sure certain behaviors will become less frequent or stop altogether, on the flipside new ones will undoubtedly arise. I hope you begin to feel better about this., I appreciate this, because mine’s favorite thing at the zoo is a water fountain that has a bit too much water pressure., Same. Child wasn’t interested in a real living giraffe which he was allowed to feed and pet. He was much more obsessed with a fountain., The prowess of modern plumbing!, Thank you. I’m on anti depressants. I did therapy for awhile but it’s too expensive unfortunately. I take breaks (my husband makes sure I get me time). but nothing seems to help much. As I know I have to go back to my real life after a few hours., I’m sorry. This really sucks, doesn’t it?, My son is about as severe as it gets. He will never be independent and likely will never speak. The worst that could happen is that we have another child who is just as profoundly disabled., Yeah, I think the increase in risk of having another child with challenges is roughly 30% once you’ve had one child with challenges, but a doctor should be able to help you evaluate your individual risk. My husband and I chose not to conceive again., We thankfully had little brother before my older was diagnosed. By the time we realized that my older son has ASD, my younger was already showing clear signs that he is NT. I’m thankful for this everyday as I don’t think I can handle or enjoy the pregnancy, first 18 mos, etc if I’m constantly worried. We are done even though we had wanted one more., I am one and done as well and I’m nodding my head in agreement . My husband also wanted another child , but I wouldn’t have survived . I’m only just regaining my mental equilibrium now after nine years , and thankfully my fertility window should shut shop in the next couple of years 🤞, Thank you for sharing your story. I’m glad to hear that things have improved for you and your son, and that you have found support and friendship in your journey. I admire your dedication. I hope you continue to find joy and fulfillment in your parenting role, and that you also find time to pursue your passions and create again. 💕, This. It’s not getting easier for me at all but yet everyone keeps saying it will lol. But I guess not everyone has a level 3 low functioning ASD kid., I am so sorry for your loss., Oh I just watched this the other day. I loved PJ talking about if he had a pill to give to his kids to make them no longer autistic that he would of course force them to take it but that he would miss them. He acknowledges the conflict we all have. We all love our children as they are but still desire so much more for them., You know what's sad? I can't watch most of the autism parenting chanels because these are made mostly by mixed families with both asd and NT kids. It feels like families with only asd kids wouldn't want to share their lives... And I also envy families who have NT kids :(, It looks like you shared an AMP link. These should load faster, but AMP is controversial because of [concerns over privacy and the Open Web](https://www.reddit.com/r/AmputatorBot/comments/ehrq3z/why_did_i_build_amputatorbot).
Maybe check out **the canonical page** instead: **[https://www.abc.net.au/news/2019-04-15/australian-story-jocelyn-moorhouse-pj-hogan-tackle-autism/10950760](https://www.abc.net.au/news/2019-04-15/australian-story-jocelyn-moorhouse-pj-hogan-tackle-autism/10950760)**
*****
^(I'm a bot | )[^(Why & About)](https://www.reddit.com/r/AmputatorBot/comments/ehrq3z/why_did_i_build_amputatorbot)^( | )[^(Summon: u/AmputatorBot)](https://www.reddit.com/r/AmputatorBot/comments/cchly3/you_can_now_summon_amputatorbot/), "Swirling eddy of despair" is such an apt and poetic term for how I'm feeling., [deleted], This. The best bit of advice I got, very early on, was 'stop trying to bring him into our world, and go join him in his'. And it's wonderful in his world, and we can connect so deeply there. Our lives are so very different to how we expected, but shifting our perspective has let us give him space to be him. Five minute walks take an hour as we stop and take in all those tiny details that matter so much to him. 'Days out' are the train museum, and the train museum, and the train museum again. The most mundane of things can bring him pure, beautiful joy - like the sound of a toy hitting the floor over and over, or the snapping together of magnets, or the calming back and forth of a crayon scribble. The more we've let him be him, the more he's shone., At the zoo, my child was interested in a semi-spiral staircase that he wanted all of us to go up and down, over and over again.
At least a fountain moves. These were stairs. Freaking stairs., My son only cares about the ramps at the zoo. Walking up then running down, over and over and over., I understand me too. Except I feel too scared to really tell my psychiatrist that lately it's so hard I have no hope. I can't work, his meltdowns have me covered in bruises, and I don't see an end in sight. I am with him 24/7 and he has to control everything. Now I can't even stay up when he goes to bed he makes me go too. He forces me to sit a certain way, when I eat he takes my food even if he doesn't like it. I eat standing up or wait til he's asleep which backfires now. Sometimes I wonder if this is bc I was Hitler in past life? Someone terrible. Its like I want an explanation as to why this is my life now. Today he attacked me nonstop for 40 minutes. I ran off the road while driving. I almost called 911 but didn't. Just tried to fight him off. We go to doc next week and i am not leaving until I get some kind of quick acting meds to stop aggression. I am getting so scared and despondent, I try not to dwell on it. all that does is make me more miserable. I do better when I have some sort of plans in place for the future when I can look forward too. I made a post here a while back about my misery and I got a lot of helpful but realistic expectations for my family’s future. You can look at my post history to find it. It was sad but at the same time helpful that I wasn’t wearing rose colored glasses anymore., I get the fear, have it myself for my kiddo. But you can’t really know that at age 3 he’ll never be independent. My Nathan is 10 now. I’m always at the brink of hopelessness, then he’ll have a little breakthrough/victory…perks me up some., OP, it's the same for us. Hugs! If you want to talk, feel free to reach out.
Our hope is to get our daughter potty trained one day and able to communicate in her own way joy and needs. We also hope that she will never get her epilepsy back, which we contained for now. She's 16 months old and still can't hold her head by herself (severe hypotonia). But in general she is a calm kid when things are okay for her. That helps a lot, I live in a rural part of Florida, the doctors here still act like autism isn't real 😂, My whole life I always had a vision of two children so it is a bummer for me too. But I am privileged in that my child will be totally able to live independently as an adult, so I'm basically just planning to resume my life in like 12 years. Even with a NT child, at this point I'd basically be starting over and I'm not about that 🤣, I’m in a good space now, thank you!, Let me tell you. He most likely does not have ID. Listening does not have a look. Learning does not have a look. He understands everything!!! 🙂, Thank you very much., True 😊, Yes , it can bring up strong emotions watching some parenting channels. it’s very painful when you feel envious of families with NT kids . I get it 🥹, I feel your pain., Nothing wrong with seeing the beauty in the most mundane/everyday things, in fact it’s a gift as far as I’m concerned. Don’t lose the kid in yourself as you grow into adult hood. It’s no wonder we struggle connecting to individuals with autism. They’re taking their time to smell the flowers and to see the forest for the trees. While we’re too busy trying to hit milestones and all that gobaldygook. It’s ok to slow down and enjoy life little by little. ❤️, And what a beautifully exciting world we live in. We grow up and seem to forget the little things. How the simplest of things can bring us joy. If anything i learn more from my autistic baby more than he learns from me., I know this is autism parenting and my son is not dx so I hope it's ok to comment here but my son loves stairs forever and ever going up and down. I just want you to know you're not alone., That sounds terrible! How old is your kiddo? Is it possible to get respite care? My nephew as he got older became violent and attacked my sister and threatened his grandma with a knife. He now lives in a sheltered home and has medication. I hate to think what would have happened to my sister if she hadn't of got help. He is now by the way pretty chilled out and an absolute joy to be with. We worked out he really needed his own space., Right. My oldest was a tornado at 3.. my youngest too..
If my oldest were reevaluated now, I'm guessing he would have a level 2 diagnosis. He can handle basic day to day stuff. He is intellectually disabled and has to be told, though: time to brush teeth.. get dressed... But otherwise, no behavior problems really. He learned to engage more with age.
But OP, no one is obligated to have more children. I have two autistic children. I am about 9 years in. It has aged me horribly. I am spent every day - 9 years of SAHM autism world.
I am grateful daily that I never had a third., There's a book I read when I was younger: 'Mr God, This Is Anna'. The little girl character, I'm not sure if there's some autistic coding there, but she definitely has the focus on details that makes autism so special to observe.
Anyway there's this bit where she finds a broken iron railing, and she thinks it's so beautiful, all the tiny little cracks and fissures on the surface making a whole landscape in her head. And she keeps asking passers-by to 'write it down big' for her - to capture the beauty and essence of what she's seeing. But they don't get it, and she gets so sad that they don't see what she's seeing, how they just see a broken rail.
It stuck with me so hard. So I try to see what my boy sees, to 'write it down big' with him, whatever the thing may be. I rarely understand the thing, and he can't tell me what it is he's experiencing, but I do understand that it matters so hard to him, so I keep on trying., I understood my son's fascination since we live in a single floor, ranch-style house. To him, stairs were a bit of a novelty. But then again, so are gorillas and zebras and all the other exotic animals there that he couldn't care less about.
It didn't help that these stairs were in the reptile house, where it was hotter than hell and humid, too. On top of that, I had injured my leg the week prior and hadn't recovered., Hello, it looks like you've made a mistake.
It's supposed to be could've, should've, would've (short for could have, would have, should have), never could of, would of, should of.
Or you misspelled something, I ain't checking everything.
Beep boop - yes, I am a bot, don't botcriminate me., Mine is nonverbal(has a ipad to talk with),ADHD,anxiety, and ASD. He's now 11, 150 pds, and 5'1"tall. We go next week to his pediatric development doc next week and I am going to tell her everything that has been happening recently. He also chews shirts and then rips them and has gotten up to 2 destroyed a day. There is definitely something going on despite just puberty onset. The need to control everything especially me has encompassed our whole life. ABA is enacting new therapy tactic to help but that takes time. The worst part is how badly he must feel to be acting this way and seeming unable to stop himself. Then there's me and I am losing my faith in my ability to keep it together. I take antidepressants and anxiety meds. He hovers over me in kitchen and I can't shut bathroom door bc he won't let me. My hands shake on a daily basis. These are the things I will tell his doc Wed. Oh and respite can come to house but I still cannot leave on errands. I have to be here, as with ABA. For me with my anxiety I would be stressed and listening for sounds of him becoming upset. So for me it defeats the purpose. That's my fault because of my own shortcomings and I'm glad it's there for others., This. ❤️🥹, Oh man that's rough!! I feel your pain going up and down stairs with an injury in the heat! We also have one story and I think yes the novelty is what's so fascinating. Mine would live on the stairs at my parents house which is also a billion degrees because they are elderly lol. It's rough., Is there any way your child can have respite care outside your home? Sounds like you are in desperate need of a break otherwise you are going to go crazy. Having seen my sister nearly have a complete breakdown because she couldn't cope was awful. My nephew is now in his thirties and I believe he begun living outside of her house when he was 18 and even by then it was already getting to breaking point. Please get help and sending you love and strength., Thank you
|
Just got a (long awaited) diagnosis. Now what?
|
*Edit to add the full diagnosis in case it is helpful:
F84.0 Autism Spectrum Disorder, requiring support without accompanying intellectual impairment without accompanying language impairment
F41.1 Generalized Anxiety Disorder, by history
*Edit again: I realized my post was unclear, so please know that I understand there is no medication to treat this. Thanks!
My child (11 AFAB) has been on a waiting list for two years (don’t even get me started) and we finally had their evaluation completed a few weeks ago. We got the comprehensive report and they were officially diagnosed, confirming our suspicions. As a family, we’re excited because now we can finally seek support so we can help my child reach their full potential and live their best life. The report was fascinating and noted things I never even realized were indicators. It provided quite a bit of insight and offered management techniques. We will meet with the psychologist in about a week so she can review the report with us and answer questions.
Even so, curious minds want to know, now what? I am familiar with neurodivergence that can be treated with medication (I have ADHD). Aside from continuing work with the school to get the 504 plan (US) in place, I’m not sure where to turn and what to start. My child sees a therapist already, so this report will certainly help guide treatment. But I’m here at home like, how do I help my kid with organizational strategies? How do I work with them to make choosing foods not as much of a nightmare? What can I do to help them recognize social cues and manage their emotions? Is the masking that they do a good thing or a bad thing?
I don’t expect anyone here to answer my specific questions, but I’m hoping I can get some thoughts on next steps. Bouncing around from website to website is only overwhelming me and not providing a concrete path to try. I know the concrete path will have a few forks in the road, but I at least want to know where the starting line is.
|
My kid is only 5 so I don't know much about older children but maybe a visual schedule could help with organizational skills? Look up social stories, they are helpful for explaining complex issues. As for food, I would try researching ARFID, I guess your child does not have an extreme case but maybe some strategies recommended for ARFID would also work.
Also I wanted to mention that autism isn't treatable with medication, heavy metal detoxing, brain stimulation etc. Anxiety or violence as a comorbidity can be treated with meds but with autism only therapies help.
Hope somebody else will be able to give you some more advice 🙂, Wow, I definitely made my post about meds confusing by not explaining that I understand there’s no medication for it. So sorry about that! I meant to be asking what strategies I could use, along with therapy, so thank you for providing some ideas!
One example is that, going to the grocery store, with every option available, they say they don’t know what they want. I had been thinking, even before the diagnosis, to make an aisle by aisle visual list of all the foods in that aisle that they like. I’m hoping that would be a good first step in alleviating some of their anxiety and paralysis around that., No need to apologise )) as for the visual grocery list, I think that's a great idea, it will definitely alleviate some anxiety. Our ABA therapist recommended it for our son to help him focus and because he has poor receptive language.
|
Just got diagnosed
|
Hello, I had posted here about a year ago about concerns for my daughter . She has now been officially diagnosed as level 2 autistic. ( as well as a couple other mental disabilities). I feel really over whelmed and am just looking for advice for starting out. She’s almost 3 and is also my first and only child so I really feel like I’m starting not knowing a whole lot.
I’m glad she got diagnosed as it’ll help move her forward with things but I feel even more sad knowing that I probably won’t have a normal life ( I mean she’s 3 and I’m already burnt out ) and neither will she. That can sound selfish as it is but i don’t have any support either so I’m really just doing this all by myself.
I was asked by the children’s hospital to maybe do a genetic test to see what side she got her autism from but I’m honestly scared to see if it was me or her dad.
I guess this is also more of a rant but i know it’s going to be hard working and being a mom to an autistic child. I see posts on here and I pray for everyone that’s been given this hand as it’s HARD . But I know I was chosen to be her mom for a reason and I’ll do my best to make sure she is happy .
But any advice for newly diagnosed toddler would be awesome. She’s already in speech therapy, early intervention, and on a waitlist for OT. She’s also getting ready for head start , I was told to apply but I don’t really know anything about it or if it’ll really help.
Also potty training, how long did it take or how old were your little ones before they / you tried? It’s a bit of a main concern for us and I don’t even know where to start. She’s scared of the toilet and doesn’t understand things because of her mixed receptive language disorder as well.
Edit * about the genetic test, again I really don’t know a whole lot but they said it’s fairly new and for research purposes, it’s from Doernbechers children’s hospital. They mentioned how certain genes could possibly be linked to autism , me and her dad can voluntarily do it. But if I can contribute to research than I think I’ll give it a try
|
It’s a lot, but you’re doing great. A diagnosis is nothing but helpful. Start therapy for sure, it makes a huge difference. It’s hard and it’s a lot though.
I would like to cut you off at the pass on the “where the autism came from” side quest. Don’t even think of it that way. It’s no one’s fault.
It’s also a gift.
I can tell you that as we learned more about autism in general, it’s as clear as day that I have mild autism and (diagnosed) severe adhd, and my wife has some sensory issues.
Clear as day now. On one hand I can blame myself or my wife could blame me, but neither of us would ever give our boy back. Already threw the receipt out. So the blame is fruitless.
Me realizing that I have at least some mild autism(presumed), and fairly severe adhd (diagnosed) has been one of the best parenting gifts my wife or I could have asked for.
So often I can see what our boy is upset about or what is overwhelming him when my wife or others around us can’t.
I connect with him over it. He trusts me because of it. He comes to me for comfort because of it. I remember feeling the way that he feels, he’s feeling it more strongly than I believe that I did. I remember it none the less. He’s my boy., Sending you a great big hug. I’d add to get yourself a therapist, ideally someone who understands neurodivergence and/or parenting. It’s helped me process things, holds me accountable to take care of myself, etc. also I spend a lot of time explaining to loved ones and friends what’s going on with my kid and basically educating them, it’s really nice to have someone who, once I lay my story out, is focused on me - and allows me to focus on me some of the time. And that in turn makes me more patient, more able to help my kiddo navigate the world., Just keep in mind that gets develop at their own pace, and the dread now about future normalcy isn't worth thinking about. My kids both concerned my wife and I when younger, we cried and felt depressed often. Over the years though they both blossomed into fully functional people. And as of today it's not very easy to even tell they even have ASD outside of a few quirks and occasional stemming.
My daughter is in college, works and has a steady BF. My son is top of his class, gifted, and already settling on career paths. Both are fully self sufficient in day to day life.
Yet my wife and I sat there like you scared, defeated, and concerned.
Side note: there is no genetic test for autism. And even if there was, who cares which parent passed it down, it's irrelevant., Emotions aside, you probably still want to get the genetic testing if your insurance covers it or if you can get it through a research study. A bonus if you can join research is being a small part in helping improve the precision of the testing and in many cases, the initiatives can also offer support resources and events to participants. In most cases, it's hard to find much, but if they do, it can be crucial for understanding what might end up going on medically with her down the line. Additionally, quite a few of the mutations that can be picked up by these tests are de novo, which means it wouldn't have been inherited from the parents and is essentially a random fluke., Hi it seems we are in the same boat. I'm not one to go online but lately I have been so depressed and burnt out. My almost 3 year old son is going to have an asd evaluation in 2 months. I know the outcome but still dredding it. He has receptive expressive language delay and sensory processing disorder. Adhd I'm sure as well.... he takes my hand and leads me to what he wants. He has been babbling more which I'm trying to stay positive about for language. Met all of his milestones on time until 18 months... I just want someone to tell me it's going to be OK and that he will grow out of it and develop language as time goes on. Nobody knows.. he doesn't really hand flap but sucks his blanket and smooshes it into the floor for comfort and just lays there. Getting better with eye contact. Laughs loves to play. My husband keeps telling me to enjoy him now and not worry. How can I not worry? Will I be a caregiver the rest of my life. Will his 8 year old NT sister always feel like she's on the back burner? This has been one of the biggest struggles of my life. So when I say I hear you. I hear you... also we haven't started potty training. He's scared of the toilet. I'm more focused on his speach. I just can't imagine a life never being able to hear his voice. Everyday is a battle. You are doing a great job by just showing up. I hope this gives you some relief that you are not alone., It sounds like you're doing lots of really good things already. Try not to overwhelm yourself, use the diagnosis to get the best support for your daughter, she'll start school at some point and if she has support, it'll be a lot easier on everyone.
potty training is unpredictable for any kid. We decided not to rush it for my boys and we did it just before they started school, they were ready and both caught on pretty quick., Just posting to find out when they invented the genetic test for autism, Dm me plz, Hey they what are the levels ? My daughter was diagnosed last year but we was never told any levels, Just FYI autism doesn’t show up on genetics tests so unsure how they’re expecting to find that out xx, Thankyou, I’ve def been looking into getting a therapist / joining more support groups. I feel like after the official diagnosis I’ve shut down and haven’t been able to do much so I’m trying to get us back on track. Thanks for the advice 💜 best to u and your kiddo, Thank you for writing this. I’ve had suicidal ideations due to the stress of my toddler and how hopeless I feel for our future. This gives me some hope., If it's okay to ask, is there official articles saying there's no genetic test for autism? On my side of family only my mom (none of her siblings or parents) has schizophrenia and my husband's side has ADHD. My husband is adamant that I passed down autism to my daughter., Yeah I’ve been thinking for a week about it and I think I’m going to give it a try. It can’t hurt and maybe it’ll help with their research. ! It doesn’t really specially matter who it came from I guess I used the wrong word when I said I was “scared”., Wow he sounds exactly like my little girl. She does the same where she leads me to what she wants, but she doesn’t talk or really even babble. She can only say “mmmmm” sounds. She also doesn’t really hand flap, but she spins and jumps and walks on her toes.
My girl also doesn’t make eye contact, very rarely. I mean it’s getting better but I’d say like only 35% of the time makes eye contact.
I very much feel you about the care giver part, I guess that’s where my brunt out comes form. I was the oldest of 6 and with no mom around I raised my siblings. I never wanted kids & having my girl was definitely a blessing , unexpected … but knowing / thinking about how she could possibly never live a normal life leaving me not living a normal life makes me very depressed as again, I feel like I’ve already raised kids and matured faster than I would’ve liked. Lol I wanted some freedom in my adult hood.
Im glad someone feels the same I do, I try not to sound selfish and I don’t think it really is a selfies think to want the best for ourselves.
No matter what the outcome of your baby boys diagnose tho , I always tell myself I was chosen for a reason. I mean she really is my only purpose / a purpose I’m willing to give my life for. And I’m sure you’ll feel the same even when you’re tired and brunt out.
Thankyou for the advice as well and hope I didn’t ramble too much lolol, You can find certain conditions that are highly associated with autism like Fagile X, Phelan McDermid, and quite a few others. It's not guaranteed though to get a definitive result, particularly if you don't have intellectual disability. My kid got the testing through a research study and they weren't able to pinpoint anything., It can show up on genetic tests, but not always. It's perhaps not as black and white as people think genetic testing is. Genetics of autism are very complicated, and a lot of it we dont understand well. At the end of the day though, some people do get answers from these tests.
OP, if you are not sure about doing genetic testing, it's not something you need to do. It just potentially gives a little more information, which may or may not be useful to you. It sounds like it might be one additional stress that you don't need right now, and that is a valid thing to say. You could always ask your doctor why they think it would be beneficial if you are not sure., [deleted], There’s no gene test for autism because “autistic genes” don’t really exist. All the genes identified are related to autism (meaning they belong to actual genetic disorders) and gene variants . An even that (genetic disorders causing autism) are not very common
https://www.spectrumnews.org/news/autism-genetics-explained/, It's just nice to know I'm not alone. I try not to sound selfish but at the same time I'm grieving the image I had for him that will never be. Who knows what can happen I guess. They could grow out of it and all of this stress was for nothing. I am always one to prepare for the worst tho lol, I agree with doesn't matter whom passed it down. Just irritates me he insists its from me because my mom is schizophrenic., None of us can know the future for any child, autistic or not. Take your child on their own terms. Learn what they need. Use the diagnosis as a key to better understand them. I had this panic when my kid was diagnosed, and then I remembered … he’s the same kid as before the diagnosis. It’s been five years since our diagnosis and I have learned a lot and gotten very angry at shitty governmental systems that don’t work very well, but my kid is great. He surprises and delights me all the time. And now I have a younger child who appears to be neurotypical and at least in my experience, he’s not actually any easier — he’s just different, with his own struggles and talents and challenges. The unknown can be scary, but try not to despair., Oh OK, I can see where you are coming from. My wife says it came from me as well... I don't really care. But I can see how you would want to be like "SEE! I TOLD YOU!", He has the best personality but I can see him struggling with sensory stimulation. How have things worked out for your child in the last five years? Did he learn to speak? Public school?, He’s currently in public school in a classroom specifically for autistic kids, with a curriculum on the diploma track. He speaks a little, mainly to ask for things or name things, and we’re in the process of getting him an AAC device to help him better communicate. You don’t have to speak to have a happy, healthy life — there are some great writings by nonspeaking autistic people that helped me stop seeing speech as the main goal and instead focus on communication of all kinds., It’s a lot, but you’re doing great. A diagnosis is nothing but helpful. Start therapy for sure, it makes a huge difference. It’s hard and it’s a lot though.
I would like to cut you off at the pass on the “where the autism came from” side quest. Don’t even think of it that way. It’s no one’s fault.
It’s also a gift.
I can tell you that as we learned more about autism in general, it’s as clear as day that I have mild autism and (diagnosed) severe adhd, and my wife has some sensory issues.
Clear as day now. On one hand I can blame myself or my wife could blame me, but neither of us would ever give our boy back. Already threw the receipt out. So the blame is fruitless.
Me realizing that I have at least some mild autism(presumed), and fairly severe adhd (diagnosed) has been one of the best parenting gifts my wife or I could have asked for.
So often I can see what our boy is upset about or what is overwhelming him when my wife or others around us can’t.
I connect with him over it. He trusts me because of it. He comes to me for comfort because of it. I remember feeling the way that he feels, he’s feeling it more strongly than I believe that I did. I remember it none the less. He’s my boy., Sending you a great big hug. I’d add to get yourself a therapist, ideally someone who understands neurodivergence and/or parenting. It’s helped me process things, holds me accountable to take care of myself, etc. also I spend a lot of time explaining to loved ones and friends what’s going on with my kid and basically educating them, it’s really nice to have someone who, once I lay my story out, is focused on me - and allows me to focus on me some of the time. And that in turn makes me more patient, more able to help my kiddo navigate the world., Just keep in mind that gets develop at their own pace, and the dread now about future normalcy isn't worth thinking about. My kids both concerned my wife and I when younger, we cried and felt depressed often. Over the years though they both blossomed into fully functional people. And as of today it's not very easy to even tell they even have ASD outside of a few quirks and occasional stemming.
My daughter is in college, works and has a steady BF. My son is top of his class, gifted, and already settling on career paths. Both are fully self sufficient in day to day life.
Yet my wife and I sat there like you scared, defeated, and concerned.
Side note: there is no genetic test for autism. And even if there was, who cares which parent passed it down, it's irrelevant., Emotions aside, you probably still want to get the genetic testing if your insurance covers it or if you can get it through a research study. A bonus if you can join research is being a small part in helping improve the precision of the testing and in many cases, the initiatives can also offer support resources and events to participants. In most cases, it's hard to find much, but if they do, it can be crucial for understanding what might end up going on medically with her down the line. Additionally, quite a few of the mutations that can be picked up by these tests are de novo, which means it wouldn't have been inherited from the parents and is essentially a random fluke., Hi it seems we are in the same boat. I'm not one to go online but lately I have been so depressed and burnt out. My almost 3 year old son is going to have an asd evaluation in 2 months. I know the outcome but still dredding it. He has receptive expressive language delay and sensory processing disorder. Adhd I'm sure as well.... he takes my hand and leads me to what he wants. He has been babbling more which I'm trying to stay positive about for language. Met all of his milestones on time until 18 months... I just want someone to tell me it's going to be OK and that he will grow out of it and develop language as time goes on. Nobody knows.. he doesn't really hand flap but sucks his blanket and smooshes it into the floor for comfort and just lays there. Getting better with eye contact. Laughs loves to play. My husband keeps telling me to enjoy him now and not worry. How can I not worry? Will I be a caregiver the rest of my life. Will his 8 year old NT sister always feel like she's on the back burner? This has been one of the biggest struggles of my life. So when I say I hear you. I hear you... also we haven't started potty training. He's scared of the toilet. I'm more focused on his speach. I just can't imagine a life never being able to hear his voice. Everyday is a battle. You are doing a great job by just showing up. I hope this gives you some relief that you are not alone., It sounds like you're doing lots of really good things already. Try not to overwhelm yourself, use the diagnosis to get the best support for your daughter, she'll start school at some point and if she has support, it'll be a lot easier on everyone.
potty training is unpredictable for any kid. We decided not to rush it for my boys and we did it just before they started school, they were ready and both caught on pretty quick., Just posting to find out when they invented the genetic test for autism, Dm me plz, Hey they what are the levels ? My daughter was diagnosed last year but we was never told any levels, Just FYI autism doesn’t show up on genetics tests so unsure how they’re expecting to find that out xx, Thankyou, I’ve def been looking into getting a therapist / joining more support groups. I feel like after the official diagnosis I’ve shut down and haven’t been able to do much so I’m trying to get us back on track. Thanks for the advice 💜 best to u and your kiddo, Thank you for writing this. I’ve had suicidal ideations due to the stress of my toddler and how hopeless I feel for our future. This gives me some hope., If it's okay to ask, is there official articles saying there's no genetic test for autism? On my side of family only my mom (none of her siblings or parents) has schizophrenia and my husband's side has ADHD. My husband is adamant that I passed down autism to my daughter., Yeah I’ve been thinking for a week about it and I think I’m going to give it a try. It can’t hurt and maybe it’ll help with their research. ! It doesn’t really specially matter who it came from I guess I used the wrong word when I said I was “scared”., Wow he sounds exactly like my little girl. She does the same where she leads me to what she wants, but she doesn’t talk or really even babble. She can only say “mmmmm” sounds. She also doesn’t really hand flap, but she spins and jumps and walks on her toes.
My girl also doesn’t make eye contact, very rarely. I mean it’s getting better but I’d say like only 35% of the time makes eye contact.
I very much feel you about the care giver part, I guess that’s where my brunt out comes form. I was the oldest of 6 and with no mom around I raised my siblings. I never wanted kids & having my girl was definitely a blessing , unexpected … but knowing / thinking about how she could possibly never live a normal life leaving me not living a normal life makes me very depressed as again, I feel like I’ve already raised kids and matured faster than I would’ve liked. Lol I wanted some freedom in my adult hood.
Im glad someone feels the same I do, I try not to sound selfish and I don’t think it really is a selfies think to want the best for ourselves.
No matter what the outcome of your baby boys diagnose tho , I always tell myself I was chosen for a reason. I mean she really is my only purpose / a purpose I’m willing to give my life for. And I’m sure you’ll feel the same even when you’re tired and brunt out.
Thankyou for the advice as well and hope I didn’t ramble too much lolol, You can find certain conditions that are highly associated with autism like Fagile X, Phelan McDermid, and quite a few others. It's not guaranteed though to get a definitive result, particularly if you don't have intellectual disability. My kid got the testing through a research study and they weren't able to pinpoint anything., It can show up on genetic tests, but not always. It's perhaps not as black and white as people think genetic testing is. Genetics of autism are very complicated, and a lot of it we dont understand well. At the end of the day though, some people do get answers from these tests.
OP, if you are not sure about doing genetic testing, it's not something you need to do. It just potentially gives a little more information, which may or may not be useful to you. It sounds like it might be one additional stress that you don't need right now, and that is a valid thing to say. You could always ask your doctor why they think it would be beneficial if you are not sure., [deleted], There’s no gene test for autism because “autistic genes” don’t really exist. All the genes identified are related to autism (meaning they belong to actual genetic disorders) and gene variants . An even that (genetic disorders causing autism) are not very common
https://www.spectrumnews.org/news/autism-genetics-explained/, It's just nice to know I'm not alone. I try not to sound selfish but at the same time I'm grieving the image I had for him that will never be. Who knows what can happen I guess. They could grow out of it and all of this stress was for nothing. I am always one to prepare for the worst tho lol, I agree with doesn't matter whom passed it down. Just irritates me he insists its from me because my mom is schizophrenic., None of us can know the future for any child, autistic or not. Take your child on their own terms. Learn what they need. Use the diagnosis as a key to better understand them. I had this panic when my kid was diagnosed, and then I remembered … he’s the same kid as before the diagnosis. It’s been five years since our diagnosis and I have learned a lot and gotten very angry at shitty governmental systems that don’t work very well, but my kid is great. He surprises and delights me all the time. And now I have a younger child who appears to be neurotypical and at least in my experience, he’s not actually any easier — he’s just different, with his own struggles and talents and challenges. The unknown can be scary, but try not to despair., Oh OK, I can see where you are coming from. My wife says it came from me as well... I don't really care. But I can see how you would want to be like "SEE! I TOLD YOU!", He has the best personality but I can see him struggling with sensory stimulation. How have things worked out for your child in the last five years? Did he learn to speak? Public school?, He’s currently in public school in a classroom specifically for autistic kids, with a curriculum on the diploma track. He speaks a little, mainly to ask for things or name things, and we’re in the process of getting him an AAC device to help him better communicate. You don’t have to speak to have a happy, healthy life — there are some great writings by nonspeaking autistic people that helped me stop seeing speech as the main goal and instead focus on communication of all kinds., It’s a lot, but you’re doing great. A diagnosis is nothing but helpful. Start therapy for sure, it makes a huge difference. It’s hard and it’s a lot though.
I would like to cut you off at the pass on the “where the autism came from” side quest. Don’t even think of it that way. It’s no one’s fault.
It’s also a gift.
I can tell you that as we learned more about autism in general, it’s as clear as day that I have mild autism and (diagnosed) severe adhd, and my wife has some sensory issues.
Clear as day now. On one hand I can blame myself or my wife could blame me, but neither of us would ever give our boy back. Already threw the receipt out. So the blame is fruitless.
Me realizing that I have at least some mild autism(presumed), and fairly severe adhd (diagnosed) has been one of the best parenting gifts my wife or I could have asked for.
So often I can see what our boy is upset about or what is overwhelming him when my wife or others around us can’t.
I connect with him over it. He trusts me because of it. He comes to me for comfort because of it. I remember feeling the way that he feels, he’s feeling it more strongly than I believe that I did. I remember it none the less. He’s my boy., Sending you a great big hug. I’d add to get yourself a therapist, ideally someone who understands neurodivergence and/or parenting. It’s helped me process things, holds me accountable to take care of myself, etc. also I spend a lot of time explaining to loved ones and friends what’s going on with my kid and basically educating them, it’s really nice to have someone who, once I lay my story out, is focused on me - and allows me to focus on me some of the time. And that in turn makes me more patient, more able to help my kiddo navigate the world., Just keep in mind that gets develop at their own pace, and the dread now about future normalcy isn't worth thinking about. My kids both concerned my wife and I when younger, we cried and felt depressed often. Over the years though they both blossomed into fully functional people. And as of today it's not very easy to even tell they even have ASD outside of a few quirks and occasional stemming.
My daughter is in college, works and has a steady BF. My son is top of his class, gifted, and already settling on career paths. Both are fully self sufficient in day to day life.
Yet my wife and I sat there like you scared, defeated, and concerned.
Side note: there is no genetic test for autism. And even if there was, who cares which parent passed it down, it's irrelevant., Emotions aside, you probably still want to get the genetic testing if your insurance covers it or if you can get it through a research study. A bonus if you can join research is being a small part in helping improve the precision of the testing and in many cases, the initiatives can also offer support resources and events to participants. In most cases, it's hard to find much, but if they do, it can be crucial for understanding what might end up going on medically with her down the line. Additionally, quite a few of the mutations that can be picked up by these tests are de novo, which means it wouldn't have been inherited from the parents and is essentially a random fluke., Hi it seems we are in the same boat. I'm not one to go online but lately I have been so depressed and burnt out. My almost 3 year old son is going to have an asd evaluation in 2 months. I know the outcome but still dredding it. He has receptive expressive language delay and sensory processing disorder. Adhd I'm sure as well.... he takes my hand and leads me to what he wants. He has been babbling more which I'm trying to stay positive about for language. Met all of his milestones on time until 18 months... I just want someone to tell me it's going to be OK and that he will grow out of it and develop language as time goes on. Nobody knows.. he doesn't really hand flap but sucks his blanket and smooshes it into the floor for comfort and just lays there. Getting better with eye contact. Laughs loves to play. My husband keeps telling me to enjoy him now and not worry. How can I not worry? Will I be a caregiver the rest of my life. Will his 8 year old NT sister always feel like she's on the back burner? This has been one of the biggest struggles of my life. So when I say I hear you. I hear you... also we haven't started potty training. He's scared of the toilet. I'm more focused on his speach. I just can't imagine a life never being able to hear his voice. Everyday is a battle. You are doing a great job by just showing up. I hope this gives you some relief that you are not alone., It sounds like you're doing lots of really good things already. Try not to overwhelm yourself, use the diagnosis to get the best support for your daughter, she'll start school at some point and if she has support, it'll be a lot easier on everyone.
potty training is unpredictable for any kid. We decided not to rush it for my boys and we did it just before they started school, they were ready and both caught on pretty quick., Just posting to find out when they invented the genetic test for autism, Dm me plz, Hey they what are the levels ? My daughter was diagnosed last year but we was never told any levels, Just FYI autism doesn’t show up on genetics tests so unsure how they’re expecting to find that out xx, Thankyou, I’ve def been looking into getting a therapist / joining more support groups. I feel like after the official diagnosis I’ve shut down and haven’t been able to do much so I’m trying to get us back on track. Thanks for the advice 💜 best to u and your kiddo, Thank you for writing this. I’ve had suicidal ideations due to the stress of my toddler and how hopeless I feel for our future. This gives me some hope., If it's okay to ask, is there official articles saying there's no genetic test for autism? On my side of family only my mom (none of her siblings or parents) has schizophrenia and my husband's side has ADHD. My husband is adamant that I passed down autism to my daughter., Yeah I’ve been thinking for a week about it and I think I’m going to give it a try. It can’t hurt and maybe it’ll help with their research. ! It doesn’t really specially matter who it came from I guess I used the wrong word when I said I was “scared”., Wow he sounds exactly like my little girl. She does the same where she leads me to what she wants, but she doesn’t talk or really even babble. She can only say “mmmmm” sounds. She also doesn’t really hand flap, but she spins and jumps and walks on her toes.
My girl also doesn’t make eye contact, very rarely. I mean it’s getting better but I’d say like only 35% of the time makes eye contact.
I very much feel you about the care giver part, I guess that’s where my brunt out comes form. I was the oldest of 6 and with no mom around I raised my siblings. I never wanted kids & having my girl was definitely a blessing , unexpected … but knowing / thinking about how she could possibly never live a normal life leaving me not living a normal life makes me very depressed as again, I feel like I’ve already raised kids and matured faster than I would’ve liked. Lol I wanted some freedom in my adult hood.
Im glad someone feels the same I do, I try not to sound selfish and I don’t think it really is a selfies think to want the best for ourselves.
No matter what the outcome of your baby boys diagnose tho , I always tell myself I was chosen for a reason. I mean she really is my only purpose / a purpose I’m willing to give my life for. And I’m sure you’ll feel the same even when you’re tired and brunt out.
Thankyou for the advice as well and hope I didn’t ramble too much lolol, You can find certain conditions that are highly associated with autism like Fagile X, Phelan McDermid, and quite a few others. It's not guaranteed though to get a definitive result, particularly if you don't have intellectual disability. My kid got the testing through a research study and they weren't able to pinpoint anything., It can show up on genetic tests, but not always. It's perhaps not as black and white as people think genetic testing is. Genetics of autism are very complicated, and a lot of it we dont understand well. At the end of the day though, some people do get answers from these tests.
OP, if you are not sure about doing genetic testing, it's not something you need to do. It just potentially gives a little more information, which may or may not be useful to you. It sounds like it might be one additional stress that you don't need right now, and that is a valid thing to say. You could always ask your doctor why they think it would be beneficial if you are not sure., [deleted], There’s no gene test for autism because “autistic genes” don’t really exist. All the genes identified are related to autism (meaning they belong to actual genetic disorders) and gene variants . An even that (genetic disorders causing autism) are not very common
https://www.spectrumnews.org/news/autism-genetics-explained/, It's just nice to know I'm not alone. I try not to sound selfish but at the same time I'm grieving the image I had for him that will never be. Who knows what can happen I guess. They could grow out of it and all of this stress was for nothing. I am always one to prepare for the worst tho lol, I agree with doesn't matter whom passed it down. Just irritates me he insists its from me because my mom is schizophrenic., None of us can know the future for any child, autistic or not. Take your child on their own terms. Learn what they need. Use the diagnosis as a key to better understand them. I had this panic when my kid was diagnosed, and then I remembered … he’s the same kid as before the diagnosis. It’s been five years since our diagnosis and I have learned a lot and gotten very angry at shitty governmental systems that don’t work very well, but my kid is great. He surprises and delights me all the time. And now I have a younger child who appears to be neurotypical and at least in my experience, he’s not actually any easier — he’s just different, with his own struggles and talents and challenges. The unknown can be scary, but try not to despair., Oh OK, I can see where you are coming from. My wife says it came from me as well... I don't really care. But I can see how you would want to be like "SEE! I TOLD YOU!", He has the best personality but I can see him struggling with sensory stimulation. How have things worked out for your child in the last five years? Did he learn to speak? Public school?, He’s currently in public school in a classroom specifically for autistic kids, with a curriculum on the diploma track. He speaks a little, mainly to ask for things or name things, and we’re in the process of getting him an AAC device to help him better communicate. You don’t have to speak to have a happy, healthy life — there are some great writings by nonspeaking autistic people that helped me stop seeing speech as the main goal and instead focus on communication of all kinds., It’s a lot, but you’re doing great. A diagnosis is nothing but helpful. Start therapy for sure, it makes a huge difference. It’s hard and it’s a lot though.
I would like to cut you off at the pass on the “where the autism came from” side quest. Don’t even think of it that way. It’s no one’s fault.
It’s also a gift.
I can tell you that as we learned more about autism in general, it’s as clear as day that I have mild autism and (diagnosed) severe adhd, and my wife has some sensory issues.
Clear as day now. On one hand I can blame myself or my wife could blame me, but neither of us would ever give our boy back. Already threw the receipt out. So the blame is fruitless.
Me realizing that I have at least some mild autism(presumed), and fairly severe adhd (diagnosed) has been one of the best parenting gifts my wife or I could have asked for.
So often I can see what our boy is upset about or what is overwhelming him when my wife or others around us can’t.
I connect with him over it. He trusts me because of it. He comes to me for comfort because of it. I remember feeling the way that he feels, he’s feeling it more strongly than I believe that I did. I remember it none the less. He’s my boy., Sending you a great big hug. I’d add to get yourself a therapist, ideally someone who understands neurodivergence and/or parenting. It’s helped me process things, holds me accountable to take care of myself, etc. also I spend a lot of time explaining to loved ones and friends what’s going on with my kid and basically educating them, it’s really nice to have someone who, once I lay my story out, is focused on me - and allows me to focus on me some of the time. And that in turn makes me more patient, more able to help my kiddo navigate the world., Just keep in mind that gets develop at their own pace, and the dread now about future normalcy isn't worth thinking about. My kids both concerned my wife and I when younger, we cried and felt depressed often. Over the years though they both blossomed into fully functional people. And as of today it's not very easy to even tell they even have ASD outside of a few quirks and occasional stemming.
My daughter is in college, works and has a steady BF. My son is top of his class, gifted, and already settling on career paths. Both are fully self sufficient in day to day life.
Yet my wife and I sat there like you scared, defeated, and concerned.
Side note: there is no genetic test for autism. And even if there was, who cares which parent passed it down, it's irrelevant., Emotions aside, you probably still want to get the genetic testing if your insurance covers it or if you can get it through a research study. A bonus if you can join research is being a small part in helping improve the precision of the testing and in many cases, the initiatives can also offer support resources and events to participants. In most cases, it's hard to find much, but if they do, it can be crucial for understanding what might end up going on medically with her down the line. Additionally, quite a few of the mutations that can be picked up by these tests are de novo, which means it wouldn't have been inherited from the parents and is essentially a random fluke., Hi it seems we are in the same boat. I'm not one to go online but lately I have been so depressed and burnt out. My almost 3 year old son is going to have an asd evaluation in 2 months. I know the outcome but still dredding it. He has receptive expressive language delay and sensory processing disorder. Adhd I'm sure as well.... he takes my hand and leads me to what he wants. He has been babbling more which I'm trying to stay positive about for language. Met all of his milestones on time until 18 months... I just want someone to tell me it's going to be OK and that he will grow out of it and develop language as time goes on. Nobody knows.. he doesn't really hand flap but sucks his blanket and smooshes it into the floor for comfort and just lays there. Getting better with eye contact. Laughs loves to play. My husband keeps telling me to enjoy him now and not worry. How can I not worry? Will I be a caregiver the rest of my life. Will his 8 year old NT sister always feel like she's on the back burner? This has been one of the biggest struggles of my life. So when I say I hear you. I hear you... also we haven't started potty training. He's scared of the toilet. I'm more focused on his speach. I just can't imagine a life never being able to hear his voice. Everyday is a battle. You are doing a great job by just showing up. I hope this gives you some relief that you are not alone., It sounds like you're doing lots of really good things already. Try not to overwhelm yourself, use the diagnosis to get the best support for your daughter, she'll start school at some point and if she has support, it'll be a lot easier on everyone.
potty training is unpredictable for any kid. We decided not to rush it for my boys and we did it just before they started school, they were ready and both caught on pretty quick., Just posting to find out when they invented the genetic test for autism, Dm me plz, Hey they what are the levels ? My daughter was diagnosed last year but we was never told any levels, Just FYI autism doesn’t show up on genetics tests so unsure how they’re expecting to find that out xx, Thankyou, I’ve def been looking into getting a therapist / joining more support groups. I feel like after the official diagnosis I’ve shut down and haven’t been able to do much so I’m trying to get us back on track. Thanks for the advice 💜 best to u and your kiddo, Thank you for writing this. I’ve had suicidal ideations due to the stress of my toddler and how hopeless I feel for our future. This gives me some hope., If it's okay to ask, is there official articles saying there's no genetic test for autism? On my side of family only my mom (none of her siblings or parents) has schizophrenia and my husband's side has ADHD. My husband is adamant that I passed down autism to my daughter., Yeah I’ve been thinking for a week about it and I think I’m going to give it a try. It can’t hurt and maybe it’ll help with their research. ! It doesn’t really specially matter who it came from I guess I used the wrong word when I said I was “scared”., Wow he sounds exactly like my little girl. She does the same where she leads me to what she wants, but she doesn’t talk or really even babble. She can only say “mmmmm” sounds. She also doesn’t really hand flap, but she spins and jumps and walks on her toes.
My girl also doesn’t make eye contact, very rarely. I mean it’s getting better but I’d say like only 35% of the time makes eye contact.
I very much feel you about the care giver part, I guess that’s where my brunt out comes form. I was the oldest of 6 and with no mom around I raised my siblings. I never wanted kids & having my girl was definitely a blessing , unexpected … but knowing / thinking about how she could possibly never live a normal life leaving me not living a normal life makes me very depressed as again, I feel like I’ve already raised kids and matured faster than I would’ve liked. Lol I wanted some freedom in my adult hood.
Im glad someone feels the same I do, I try not to sound selfish and I don’t think it really is a selfies think to want the best for ourselves.
No matter what the outcome of your baby boys diagnose tho , I always tell myself I was chosen for a reason. I mean she really is my only purpose / a purpose I’m willing to give my life for. And I’m sure you’ll feel the same even when you’re tired and brunt out.
Thankyou for the advice as well and hope I didn’t ramble too much lolol, You can find certain conditions that are highly associated with autism like Fagile X, Phelan McDermid, and quite a few others. It's not guaranteed though to get a definitive result, particularly if you don't have intellectual disability. My kid got the testing through a research study and they weren't able to pinpoint anything., It can show up on genetic tests, but not always. It's perhaps not as black and white as people think genetic testing is. Genetics of autism are very complicated, and a lot of it we dont understand well. At the end of the day though, some people do get answers from these tests.
OP, if you are not sure about doing genetic testing, it's not something you need to do. It just potentially gives a little more information, which may or may not be useful to you. It sounds like it might be one additional stress that you don't need right now, and that is a valid thing to say. You could always ask your doctor why they think it would be beneficial if you are not sure., [deleted], There’s no gene test for autism because “autistic genes” don’t really exist. All the genes identified are related to autism (meaning they belong to actual genetic disorders) and gene variants . An even that (genetic disorders causing autism) are not very common
https://www.spectrumnews.org/news/autism-genetics-explained/, It's just nice to know I'm not alone. I try not to sound selfish but at the same time I'm grieving the image I had for him that will never be. Who knows what can happen I guess. They could grow out of it and all of this stress was for nothing. I am always one to prepare for the worst tho lol, I agree with doesn't matter whom passed it down. Just irritates me he insists its from me because my mom is schizophrenic., None of us can know the future for any child, autistic or not. Take your child on their own terms. Learn what they need. Use the diagnosis as a key to better understand them. I had this panic when my kid was diagnosed, and then I remembered … he’s the same kid as before the diagnosis. It’s been five years since our diagnosis and I have learned a lot and gotten very angry at shitty governmental systems that don’t work very well, but my kid is great. He surprises and delights me all the time. And now I have a younger child who appears to be neurotypical and at least in my experience, he’s not actually any easier — he’s just different, with his own struggles and talents and challenges. The unknown can be scary, but try not to despair., Oh OK, I can see where you are coming from. My wife says it came from me as well... I don't really care. But I can see how you would want to be like "SEE! I TOLD YOU!", He has the best personality but I can see him struggling with sensory stimulation. How have things worked out for your child in the last five years? Did he learn to speak? Public school?, He’s currently in public school in a classroom specifically for autistic kids, with a curriculum on the diploma track. He speaks a little, mainly to ask for things or name things, and we’re in the process of getting him an AAC device to help him better communicate. You don’t have to speak to have a happy, healthy life — there are some great writings by nonspeaking autistic people that helped me stop seeing speech as the main goal and instead focus on communication of all kinds.
|
Just need to vent. I feel selfish. I feel like a terrible person and a worse parent. I don’t know how we all do this for so long.
|
This is a throwaway account because I’m on here often with words of encouragement. I feel like lately my words of encouragement on here are just lies. Just things I say online maybe in the hopes of actually feeling them myself one day.
I love my son. That is something that actually isn’t a lie. I love him so very much. I just do not see any way possible though how my life can continue going on this way anymore. All of my peace and joy has been taken. All of my other kids peace and joy has been taken. My wife’s peace and joy has been taken. It is crossing my mind every day lately that we would all be better off if we were to put our autistic son up for adoption. I just do not see how it is possible for us to keep moving forward this way. I love him - but my other children and my wife deserve my love and attention as well. Because of my autistic son, my other children are robbed of love and affection because having him is a 24-7 job. Now it’s summer and he has already been kicked out of every camp within 15 miles. He attacks other kids with scissors. He urinates on the other kids. He attacks teachers and camp counselors with scissors or any weapon he can find. Sometimes it looks like he really has the devil inside of him.
Childrens Hospital cannot handle him. A long term treatment center could not handle him. We found a long term home style thing that was specifically designed for children on the spectrum and they can’t handle him. During the school year we get phone calls almost every day that we need to come pick him up for his behavior. On the days that he actually gets through the whole school day, he’ll have a meltdown about getting on the bus and so we have to go pick him up. My wife needed to quit her job because of this. All of her hopes and dreams and years of school were crushed and instead of chasing her dream she sits by the phone all day waiting for the call that he needs to be picked up or dealing with some sort of therapist or taking calls about meetings for him. The loss of her income is crushing us.
He attacks us. He damages our vehicles. Last week he shattered my bedroom window because one of his video games stopped working. My daughter cannot make friends in school because she is simply known as “his sister”. We no longer have friends. Our neighbors all want us gone. We don’t know how our rent will be paid next week.
We have been through every available service for him and nothing has helped. He wakes us up at 10pm, 2am, 5am, 7am. Sleep is no longer an option. We cannot lock our door because he just breaks it. Every doorknob in the house is broken. 3 windows are shattered and sit unrepaired. I drive around in a car that has a trash bag covering one of the rear windows that he shattered.
He is violent and now that he is 10 it is becoming harder to restrain him. He is very strong.
I’m usually on here telling people “just hang in there, it gets better” and the truth is, it doesn’t get better. I am broken right now over the thought of somehow giving him away. The rest of our family does not deserve to suffer this way any longer. The meltdowns are constant. The damage (to our property, our finances, our vehicles, and our relationship with each other) has gone on for too long. I am convinced that the devil lives inside of him. I am convinced that as long as he is here with us, we will all suffer daily. I am convinced that it’s breaking our family apart and his illness has made all of us sicker than he is.
I just needed to vent this to some people that don’t know who I am. God bless all of you. The hand we have been dealt is not an easy one. I pray for all of you that one day you will find peace in your lives. The parent of an autistic child goes through a daily struggle that others could never mentally grasp. I envy those of you that somehow lead normal lives still. I am not as strong as you are.
I love my son very much. I also resent him very much.
|
I'm just a parent, not any kind of an expert, but what you've described here sounds absolutely unendurable.
I'm assuming you've already done all that can be done with OT support, so it would seem the next step may be to pursue medication that could help your son feel calm and sleep better. Maybe you've already done this?
I think you're right to continue to pursue residential, group home options for him. His living at home does not sound safe for your family, and as he gets further into puberty things could become more dangerous. (Keep in mind that sometimes as children get older and grow into adulthood, their dangerous behavior can naturally decrease. In some cases they can safely live at home again, even if they needed to live in a group home for a while.)
Are you able to work with a social worker in your county? Many places have a parent-to-parent support network for children with disability, they can share leads and resources for situations like this.
Here is a podcast where a young mom talks about her approach to finding her severely autistic child a group home where he could be safe:
https://podcasts.apple.com/us/podcast/living-apart-from-my-son-emely-zavalas-story/id1586414115?i=1000610388222, Hey. This is all terrible. It's unfair to you all that there is nobody who is helping you. The idea that an RTF would turn you away from dialing in (at the very minimum) a stabilization program is chilling to me.
We all understand that you love your child and that you aren't trying to dehumanize him- it's not necessary to qualify any of your feelings with that regard, but you're all being terrorized and controlled by forces that are beyond any of your control. I feel like your family is getting to the dangerous point of not being *able* to put on your own oxygen masks...
There has to be some kind of crisis intervention support- if he needs to live in a residential facility that can handle his needs (there has to be one somewhere- it might not be nearby- but sometimes desperate measures are called for and you need this help. You are in an untenable situation that is detrimental to your family's collective health and wellbeing and it's ok to admit that and DEMAND HELP.)
Please don't frame anything as an idea of "giving him away" that's not what you are doing or what anyone wants- but it needs to be recognized that some children, through absolutely no fault of their own- are not able to safely live in a family home and environment. Many people try to force this scenario out of desperation and shame and stigma and lack of resources, and it's WRONG. Your county services can deal with one mental health crisis or they can deal with several for your whole family... But they need to do something immediately. They need to help you find a setting that can manage your son's safety and behaviors while you all catch your breath and get a proper long term plan in place.
I assume you're documenting everything that's been tried and what has and hasn't helped. Do you have service and support coordinators? Have they offered anything?
I know they often are useless, apart from " maybe we can get ya on a list for respite care if it becomes available...." but sometimes if you speak in no uncertain terms about what you need they will suddenly remember other resources. Idk how open you've been with them about your reality- I know that part is hard and it feels shameful, so sometimes you can't just pour your heart out about how close you are to breaking... Please don't feel shame. This is a life that nobody is trained for and it's not possible to navigate without so much help.
Alternatively- you can look yourself for programs in the surrounding area that could help you. Psychiatric centers that offer idd/asd programming (these aren't miracle makers by any means, but we are talking crisis mode and survival.) *Call them directly* don't wait for your support coordinator to pitch in. They do this every day. They will direct you to the channels you need to use for an admission. They will inform of waiting lists and alternatives in the region. They are more useful than many service/support coordinators...) Call your insurance company and tell them ypu need numbers for crisis psychiatric care specific to your child's dx.
Seek out any residential facilities that would accept a child like yours- sometimes when a kid is incompatible with his environment, he can actually flourish in a more customized one with customized care- this isn't a judgement on your parenting, this is a fact. We all thrive in the proper conditions. Some kids flourish in a more appropriate setting, and your family can heal and reestablish a parent /child relationship vs a crisis management /carer relationship. Call them and asked their directors how to get in. They tend to be extremely kind and know who to talk to and how to speak to them.
These services are SO GATEKEPT. The actual service providers usually tell a totally different story than those designated to "help you" access the services from outside. They will tell you the "secret passwords" but you have to ask for them.
This particular situation is one I want to see addressed more, because more resources are desperately needed and the shame that people are made to feel for needing or wanting them, keeps them from being discussed at all. Nobody wants to say- this is no way for anyone to live, but THIS IS NO WAY FOR ANYONE TO LIVE.
[see if the NCSA resources list has anything for you](https://www.ncsautism.org/)
Be relentless in accessing the care your son needs and deserves and the support your family needs.
Please don't feel ashamed. Would you look down on someone in your situation?, What state are you in? I know in Texas to get a long term residential Placement you have to give your child up to the state. Honestly with the fact that you’ve been through all the meds and you have other children to worry about I would start looking into this option. I know of several parents who have made this descision and it ended up being the best thing for thier family. He could be in a home and y’all can visit but Essentially he wouldn’t have any demands placed upon him. If he’s this aggressive on medicine at 10, I’m sure that when he’s bigger you definitely won’t be abale to man handle him and residential is the likely placenta for most of our severe children anyways, you’ll just be starting a little early. ❤️big hugs., There’s no shame in seeking residential options if that is what’s best for your family. ❤️, I see you man. Have you tried THC?, Praying for you brother. I sometimes worry about what the future will hold for my son (5yo L1-2), and for us _with_ my son. We're generally ok, but there have been particularly hard times, like a few months ago when he had regular violent meltdowns, when I didn't know how much of it I can still take.
I don't have any answers for you, but I can only imagine how hard it is to feel like you have to choose between the well-being of your son and the rest of your family. I'm praying for wisdom for you.
I gather from your post that, like me, you might be trying to make sense of what God is doing in your life with your son's challenges. If that's the case, feel free to PM me if you want someone to talk it through with., Maybe you should look into making him a ward of the state., It’s ok to seek a residential placement. The waitlists are probably long so start looking now. Just touring isn’t a final decision but important research in considering options.
It’s not something any parent ever wants to do. A residential program can offer the same schedule every day and hopefully a safer environment for everyone.
It’s probably worth your time to look. It doesn’t mean you can’t try all other options first but at least you can become familiar with your choices. They might even have some suggestions especially as many facilities probably deal with multiple higher needs children., There’s another parent on here who recently shared they placed their child with a similar background in a residential facility. They had a very hard time getting in, I hope they chime in they had great advice how to work the system.
This is unsustainable. Some kids just can’t live at home. The best situation would be keeping parental rights and being able to visit and keep your relationship
I’m so sorry you are going through this., My son has never been violent, thank goodness. I cannot imagine that stress. My son is in his late 20's, but emotionally still an adolescent with all of the angst and drama of a 14yr old. It is exhausting, and I know it will never end.
It's hard. Yes, we have lost friends because we never know when a meltdown is coming. He can be rude because he thinks he knows everything.
For a long time, we thought maybe things would improve with age. Nope. We are still dealing with the same issues. We will be dealing with this until we die.
I get through it one day at a time. That sounds so cliche, but it is the only way I can do it. We need to plan for the future, but it is overwhelming. I focus on getting through today.
I hope your family can find some moments of peace, Is he on any kind of medication? Do you have a social worker? I feel like there must be some step before adoption, maybe you haven’t found the right residential program yet? I think it’s clear that you love him and that he also needs to move out of your home., I’m really sorry 😔 I wish I could take all of your pain and suffering away, especially your son. I hope you find the answers you need and I’ll keep you and your family in my thoughts and prayers. Sending a big hug your way, I want to commend you for opening up and sharing your feelings. It takes great courage to express the challenges and mixed emotions you’re experiencing. Your love for your son shines through, and I believe that love will guide you through these tough times. It’s understandable to feel overwhelmed, but please know that there is hope. By reaching out for support and exploring various resources, you can find new strategies and approaches that may bring positive changes. You’re not alone on this journey, and we are here to offer guidance and empathy. Remember to take care of yourself along the way, as your well-being is just as important. Together, we can navigate through this and find brighter days ahead., Wow. This is severe and is beyond anyone can handle. I support your decision to place him in a facility. You’ve done what you can and can’t sacrifice the rest of your life and family for a child who seems only to get worse despite trying many therapies and medications. Good luck in whatever you decide. You are not a bad parent., I’m a parent of a 4.5 yro autistic child, but I’m also a social worker in child protection. Before I had my son I was already aware that some Neurodevelopmental disorders or disabilities cause behaviours that are simply not compatible with a home environment. I always felt deeply sorry for these families and the awful choices they had to make. I hate to say it, but your son sounds like one of these children. I’m really sorry your going through this , it must be soul crushing. It does sound like time to find another option for him. Hopefully not adoption but either group home via the disability or even the child protection system so you can still have contact with him., I am so sorry you are going through this. I know this was a vent post and not an advice post, but is he on any medications, such as anti-psycotics? This has been very helpful for us. My son also was diagnosed with PANDAS when he was younger and antibiotics were also very helpful in curbing violent behavior. My guess is that you have explored all these avenues and nothing has worked, since that is often the case, but I figured I would mention them. Also, you are not a terrible person. It is HARD., The school should not be sending him home for his behavior. Please get an advocate (your chapter of the Arc should have free advocacy supports). Does he have a behavior intervention plan at school? Have they done a functional behavior analysis? They absolutely should have.
The next time the school calls to get him over his behavior, the response should be: "is he being suspended?" If no, you don't need to go and get him. E-mail the SPED director and the IEP team each time this happens. If they ARE suspending him, email about it each time. Once he's missed 10 days for that, I believe they're required to have a manifestation determination meeting.
I think addressing that would take some strain off of your family. The rest is undeniably very difficult. Autism is hereditary in my family, and while we have issues, it is not the same as in simplex families (one person diagnosed)., This isn’t Autism. You need to get him the right treatment. Aggression like this isn’t characteristic of ASD. Bipolar or Schizophrenia perhaps with a personality disorder need to be considered. Get a second opinion. It’s a tragedy that other mental adaptations are stigmatized and people latch on to autism as a diagnosis to everyone’s detriment because it’s attached to high intelligence. All the other disorders are also attached to high intellect but need different treatment approaches. He’s in need of mood stabilizers or possibly anxiety meds in my opinion. But I am not a professional. It may even be as simple as ADHD. Find a neuropsychologist or paediatric specialist. Also you are approaching a time when hormones go haywire for the next seven years. Don’t accept that it’s Autism. If he’s playing video games at ten he’s not intellectually impaired. There is hope.
“Then, at the age of 6, he was sent to a special school, from which he was later withdrawn due to aggressive behavior. In adolescence, he presented with unprovoked aggressive behavior, hallucinatory behavior, irrelevant talk and disturbed sleep. A diagnosis of paranoid schizophrenia comorbid with ASD was performed.
https://www.frontiersin.org/articles/10.3389/fpsyt.2022.768586/full#:~:text=According%20to%20literature%2C%20up%20to,and%2060%25%20(12)., Hugs to you. Our situation is not as severe but it definitely has an effect on us and our other kids. Our oldest spends most of their time out of the house. Our youngest can’t have friends over because of how he might behave. So many broken doors. I have bruises all over my arm from getting hit. I’m afraid one day he will seriously injure his younger sibling or one of our pets. We can’t make plans because of how he acts in public. I’m considering equine therapy but I know there aren’t a lot of programs for kids like him and it’s very likely he could get kicked out if we find one because he doesn’t listen to instructions, he thinks he knows the right way to do things even if that means he or someone else will get hurt. I don’t have a lot to offer other than saying I feel for you and I know you are doing your best. I hope you get some helpful ideas., I am so, so sorry. What you described sounds absolutely awful. I can’t imagine how hard that must be for you and your other family members. It breaks my heart. I have no advice for you but just want you to know that I am read your story and am sending positive energy your way.
I can tell you’re not selfish. You sound like an amazing dad and husband who is going through something no one should have to go through., I ugly cried in the shower reading this. Big hugs, I hope life gets a bit easier for you soon, There was a podcast episode on a similar situation with a younger kid. Moms talk autism: Living apart from my son, I echo the suggestions to try THC. My son is an adult and how I wish we had that option when he was younger. It has been the very best of every therapy, intervention, and medication we have tried over the years. It takes away my son’s anxiety and helps him tremendously with OCD and aggression.
Has your son had genetic testing in the past few years? If you are able, try to check out Smith Magenis Syndrome. Individuals with SMS often have developmental delays, autism, a severe sleep disorder and very difficult behaviors. A diagnosis won’t change things but would give you some support and the knowledge that you truly are not alone.
I’m so very sorry for all you are enduring., There’s isn’t much I can say except thank you for feeling comfortable to share and vent your feelings. It’s posts like these that make me wish we all lived together in one community and pool our resources together to help one another. Unrealistic and idealistic I know. Wish I could do something more to help you and your family though. Idek the right words to say., In my state at least you would be able to place him into foster care based on what you have written. Especially the fact you can't care for your other children and they are in a neglect situation. Perhaps after in fostercare the different home situations that told you "no" would not say the same thing or there are different options.
My heart goes out to you guys and I hope someone gives you guys some help., Hey, I’m not a parent. Unfortunately, putting him into the system will not get his needs met…especially if an autism specific residential program can’t take him. My heart hurts for you, your family and especially your son because he is suffering too., You would have to go through a private adoption and I highly doubt anyone would take him. I just don't think putting him up for adoption or giving him away is an actual option. Is there a reason you think you would be able to give him up for adoption? Has someone offered to take him?
You could probably abandon him at a hospital and face child abandonment charges which might be worth it. You might go to prison for a short amount of time and CPS would probably see how your other children are faring. But at least this would be a permanent solution., I’m so sorry I do think that perhaps a residential or in patient facility might be best for your son and your family. I know many of these places have very long waiting list so I think if your considering it as an option it might be worthwhile to get him on a waiting list now, if some of the solutions recommended are effective you can take him off the list but even having that option might make dealing with the current situation more manageable., I'm so sorry for what you and your family are going through. Maybe medication needs to be re assess. With my son, melatonin made him worse. He could not sleep and he would have severe meltdowns all day. We abandoned the melatonin and started him on anti anxiety med and ADHD non stimulant med that helped him sleep at night and it made a world difference. I don't know if this helps, it helped us. I pray that your family finds peace., I'm so sorry you're going through this. I know my son is autistic, he gets evaluated in September. But I thank God every single day that meltdowns are non existent and he's not violent at all. He's a laid back kid and totally calm. But he's only 2.5 years old. I wonder if it's coming when he gets older. It scares me., My son is 3.5 and he can be violent at any random time it can be unsettling especially with a 4 month old baby right now. However he does show his love for his brother but he is not mindful of is actions and it can be scary. This is just one of my situations I have with my son. Im typing this after I just put him to bed for 2nd time even though I know he will wake up again in another 2-3 hours. I send my support and say that you are not alone these struggles can be very difficult. I don’t know you but I can feel your hurt soul I wish for your happiness and light to return., Try Nemechek protocol, We don’t live a normal life . If I detail all what me and my spouse have to do to keep our child home few would comprehend it. A big part of it being he’s an only child, but I’m not exaggerating it takes a budget of at least $10k a month and we can’t even get respite , so we spend a fortune on the obsessions that keep him content (astronomic water bill, gazillion sensory toys, favorite food, etc) . Luckily the school district settlement and private insurance helps for the rest. He has destroyed the interior of two vehicles, working on the third one. I’m so sorry your child and your family have to endure all this suffering, I don’t know how you can survive, It is not a one person job. You have to build a team of loved ones to support you and share the work. It is so hard. It is so worth it. Thank you for doing it!, Hi, I just came across this while looking for anything to read on dmdd. Which I would recommend looking into. Is your child on SSRIs at all? Just to check on SSRI activation syndrome.
Anyways, he sounds like my 9 year old daughter. Do you have a Wrap Around Intensive Services program where you are? These are usually run by community groups like Catholic Community Services, and funded by the state. Ours only takes Medicaid, and there is nothing this level of intensity that I have found. It’s a family based systems program that is designed to come into the home and set up safety plans and get families stable through work with the children and parents. It’s a lot, but it has provided us much more space in our lives with my one twin who is in the program. They help with the other twin, too, while we try to get her the correct services, and we have the option of referring her in as well if it comes to that.
If you are so inclined, feel free to dm me and I can help you see if there is something like this where you are. My team will go into schools, camps, etc to coach these programs to handle our kids. They coach us. They are specifically designed for what you are going through. It isn’t easy, but it’s much better than not having support., Hi. Thanks for the reply. At nighttime we do clinodine and melatonin. It worked wonderful for a while but not so much anymore. It seems like he tries to “fight” the sleepy feeling and then misses that window of falling asleep.
Funny thing is - once he has all of us awake and upset, he’ll go take a peaceful nap. Must be nice., There is an excellent point being made here - finding your son the support appropriate for his needs is not giving him away.
This is such a challenging situation and not one that any family is really equipped to handle in a residential setting. He’s only 10. I don’t believe it’s impossible for him to get better, but it seems pretty clear that he could benefit from (and would be safer in) a professional setting with staff equipped to handle this. Perhaps too that would leave the possibility open to him stabilizing and improving.
Im so sorry you all are dealing with this and I hope you find the right situation for him soon ❤️, What state are you in? There are options in other states., I have not, but I was reading on that the other week. Seems possibly promising. Is this something you have experience with?, We are trying this with my adult son. I think it makes him more hyper. Results vary. Great advice though., Idk why I never thought of this as a solution but it makes so much sense!! I love that they make edibles in such small doses, lowest I’ve seen are 2mg mints.
Great suggestion for OP :), I’m glad you said this! I was scrolling down to see if someone had. OP I would absolutely look into this if I were you. We have used it intermittently with our daughter with really good results. We also give her CBD at night. For her, she was melatonin resistant and I think Clonodine gave her lucid dreams/ night terrors. She’s nonverbal so we were just going off of her behavior when she woke up., This is amazing advice., Thank you. You’re very kind. I know God has a plan for us and I believe that everything is happening just as it should be (God’s will) but I’m just a bit lost as to when I’ll get that answer.
After I pray, I listen. I listen for God for any sort of answer and I look for it and listen for it all day. Many times I get an answer by seeing others stay strong through it all. But then other times I see my answer as observing a family together all laughing and enjoying life. So, a bit of mixed signals., Sometimes the *threat* of doing this is enough to make progress in getting services and supports- nobody wants that- not the parent, nor the state- but there are other options before that, which enable his needs to be managed and met by state services, while the parent remains the legal parent and guardian. These need to be accessible and available to all who need them. They absolutely need to be available to any family in crisis.
You shouldn't have to know the secret password to even find out who provides such services and supports, but here we are in post-Regan america..., I hope it’s ok to reshare this post but this parent might be an excellent resource to you
https://www.reddit.com/r/Autism_Parenting/comments/uqwah7/60_days_post_residential_placement/?utm_source=share&utm_medium=ios_app&utm_name=iossmf, Yes. LOTS of medications. We finally found the combination that seemed to be right, but it only worked for so long. I suffer myself with panic disorder and depression and I know all too well that meds are just a band-aid on a bullet wound. The meds that worked well were increased when the violent meltdowns started again and that helped for a small time also. I’m pretty sure that we are outta options there. Someone did mention medical THC though and I’m gonna look into this.
The thought of giving him away is the same as my thoughts about getting in better shape - I think if it often, but it will likely never come to fruition😂, Thank you. Yes, meds out the wazoo! Some helped but only for a short time. It seemed as though some made him even worse., What about the other children's rights to an education without anxiety and fear?? If this kid is violent, yes, he should be sent out. Wtf. Other people exist and matter too!, I was thinking this as well.
Of course, many autistic people have aggressive or violent behaviours occasionally. But the extent of it from OPs son sounds outside of usual autism.
A game changer for my brother who has autism and had some aggressive behaviours (due to anxiety) was anti-anxiety and anti-depression medication during teenage years.
Valium might be an option that can help everyone, including OPs son, to catch a break?
But yeh, this sounds bigger than just autism., DMDD crossed my mind as well… we started seeing a psychologist to help manage my son’s meds, and I noticed this in her notes after we talked about aggression and how we can never pinpoint the trigger (son is 17 and non-verbal). Perhaps evaluating for other diagnoses/ comorbidities might open up some more therapeutic options., This is, very, VERY likely, not " simply ADHD".
Also, a person doesn't need to be mentally impaired to be autistic.
And, on the other hand, plenty of kids who ARE mentally impaired di play videogames.
Most than likely, the kid has a combo of autism plus several other issues., He's non verbal. No words. I don't know which is worse., We also do clonidine and melatonin at night, but when was the last time he had his dosage increased? Thankfully, we haven’t had to do this yet but I have often heard of children growing and needing the dosage adjusted because it had not been in years.
Another thing, this isn’t really helpful, nor is it fun to hear but electronic addiction is sooo bad and I guess I never really realized just HOW bad it was until my son’s iPad broke and he went a while without it. He’s broken numerous TVs, iPads, etc. but he used to be way more aggressive than he is now. Once his last iPad shattered and no longer worked, I told him I was not investing in a new one. It was obviously a rough transition because this was one of very few things that maintained his interest or attention. But in the following months, I felt like he made a 180. He was no longer pinching, hitting, pulling his sisters hair, or harming his peers. He became a lot more bearable and easy to deal with.
His pediatrician also told me of stories of another patient that had visited so many specialists and they couldn’t figure out what was going. And he was so aggressive and violent. Then one day, he came in, hugged her and thanked her. His mom said since his Xbox broke, and was not replaced, it’s like he was a brand new person. This was a child who carried his controller everywhere he went and it sat at the dinner table with them on outings..
Again, not really advice or helpful, just wanted to point out that electronics can lead to some very strange, aggressive behaviors. So I just wanted to make sure you were aware of this Incase there’s any potential that it may help y’all like it helped us.
Otherwise, all I can do is empathize and send prayers/hugs/good vibes to you and your family. I truly hope that it does get easier someday or that you all are able to sort through this!, Hey!! My daughter is your son behaviorally. It is very hard and very frustrating, and I'm really sorry you all are being held hostage. It sounds like he needs a medication reevaluation. It also sounds like you need help to place him at a safe place. My daughter is in residential living, and honestly I couldn't see any way forward caring for her 24/7. Where are you located? Do you have a social worker?, How does one pay for it?, It is. I was in dire straits with my 10 year old son, similar to your. None of the pharmaceuticals (Abilify, Risperdal etc) worked at all. Got him a medicinal use card and now give him gummies with THC/CBD blend as needed. It worked for us. Mileage obviously may vary. DM if you ever want to chat., I am a caregiver for my autistic son. Any questions you have feel free to shoot me a message. I was just about to comment to get this kid on THC, asap., If you do give it a try I would love to hear a follow up a little down the track to see how it went. Best of luck!, I feel the same as you do. I pray for things to improve and it doesn't seem to. My son physically attacks me and we have been on different meds now it's amanatadine and clonidine at night. He's 11, 150 pds super strong. I have literally been at my wits end last 2 mos. For some reason though he hasn't hurt me in 8 days! He's been back to himself and I don't know what changed but it gives me faith in future. You are not alone at all. People understand and commiserate. Much love to yall, Yeah it's tough. The way I see it, God doesn't always give us an answer while were going through - sometimes it only becomes clear years later why you had to go through it. I think CS Lewis used the analogy of someone suddenly walking in front of you when you're driving - in the moment, you don't need to know _why_ it happened, just what the right way is to deal with it. I'm praying that God will show that to you, and that He'll speak to you through people who have wisdom and know you and your situation well., If you are a parent of an autistic child and you have panic disorders and depression, you should maybe consider whether you’re autistic as well. Many of us get misdiagnosed with depression, anxiety, panic attacks, BPD…etc., Hello just wanted to add that growing kids need almost constant adjustments to meds, is your provider open to this? It’s really difficult to find the right combo and dosages because it’s trial and error., Some prescription meds do increase anger/violence sometimes. Have to be careful there, and it can be difficult to tell. There can be interactions between them as well. Hope you find some relief with CDB/THC. The calming strains can definitely help., I think familiarizing yourself with special education state laws and IDEA Part B is necessary here.
The options are not only "allow him to hurt other children, or send him home."
The point of a behavior intervention plan is addressing problem behavior - including aggressive behavior. And if it cannot be reduced, plans have to be made for him.
Schools can't just schuck all responsibility like this one is trying to do. They're denying this child FAPE., Then he should be put into his own small classroom with only an EA, not sent home., Of course other people matter but no one is debating that. This forum is about people coming together and speaking honestly about our journeys. Negativity like this is BS. You don't know what kind of class his child is in. You know nothing, Jon Snow so kindly see yourself out, Seconded, but with the caveat that my experience was with a child that wasn’t nearly as hard to handle. We went to self-administered free screen time with a limit in the total time spent. And having a lot to do that isn’t addictive-type screen activity. But OP is dealing with a severe crisis here - it sounds as though the break that screen time provides might be essential and worth the meltdown when it stops. If screens were restricted or stopped it might lower the violent behavior a bit but not enough to allow the family to have healthy lives. And the violence during that transition could be extreme.
My daughter had a diagnosis of ODD at one point, which turned out to be wrong. Or maybe we just got it early. I don’t know much about the disorder, but could that be happening here? Would considering that possibility be helpful?, Thirding. Every autistic and NT kid is different but one of my boys is super sensitive to electronics and specifically TV programs. We tried strict daily limits but it just leads to overstimulation if it’s more than an hr a day. We’ve gone from 2-3 hrs a day to maybe 5 hrs total in the whole week and seen a huge improvement., How old is your daughter?, Its amazing how it can really change someone from cold and mistrustful to relaxed and euphoric., I was also going to comment this, Eh, it's common for people who aren't familiar with these laws, and the options within schools, to have emotional reactions and assume there are only two options - often they are fearing their own children being in an environment with an aggressive student.
This person's autistic child is only 3, so they're likely just entering this arena and don't know the protections in place for students whose behavior is related to their disability.
These protections, for what it's worth, Free-Device6541, do not mean "freedom to hurt other kids."
My younger autistic child has some aggression - not toward kids. My oldest isn't aggressive at all.
None of us, even people with aggressive children, want their kids in school and hurting other children. No one with an aggressive child is just shrugging and saying "it is what it is."
OP's school has correctly realized that providing the supports this child needs costs money. What's the cheaper option? Send him home. Legally, they're not supposed to do that. Legally, they are not supposed to be denying necessary services based on money (but schools will try to get away with it, all the time).
If this child requires a self-contained environment with just one adult, or several, that needs to be considered. If he needs to be in a specialized school because the public school system can't provide what he needs, they're supposed to do that.
A few decades back, schools weren't obligated to take disabled students at all. We don't want to backslide into those days. Yes, even for the autistic children whose struggles are very, very big.
There should never be a disabled child whose needs are too great for the education system., Oh, absolutely, sometimes the risks of taking away electronics don't necessarily mitigate the benefits of having them handy. To this day, the only way to keep my son calm at most social events is his blanket, headphones, and allowing him to watch videos or play games on my phone. Just thought it was worth noting that screen time can cause aggression and for us, I'm pretty sure it contributed to the sleep issues. They (doctors and researchers?) state that the dopamine activity that goes on within the brain continues and has residual effects, even when you stop playing.
My son was still allowed to have screen time, and we incorporated his use of my xbox, but the stipulation is that he has to stop playing video games AT LEAST an hour to an hour and a half before bed. Otherwise, his mind wasn't settling, so he was waking up in the middle of the night and trying to go back to the xbox because that's all that was on his little brain. And his brain was seeking that dopamine induced stimulation. Obviously, every child is different and this may not even be an issue for OP's child's sleep issues. I just know that sometimes these things get overlooked.
On a side note, I do not think your questions were directed towards me, and I do not personally have any experience with ODD, but my cousin's son was diagnosed with ODD and ADHD not long before my son received his ADHD diagnosis. Honestly, I have considered the possibility of ODD for my son in the past, but again, once he lost his full-time access to electronics, a lot (not all) of his aggressive behaviors improved significantly. Correct me if I'm wrong, but doesn't ODD revolve around defiance and vindictive behavior? I believe I read that often times, ODD diagnosed children do participate in vindictive actions and retaliation. That might actually make sense for OP and be worth looking into. Especially if the child is causing so much of a disturbance and then resting peacefully once they realize the rest of the home has been disturbed.
Sorry for the long post, but if you've read this far, thank you., She is now 25., I have had mine sent home several times and it's a constant worry he may hurt a kiddo. He's in a self contained class., That’s was really interesting, and good to know about the dopamine issue. It’s great that you were given that much information on it.
Regarding ODD, it sounds like you know more than I do. I heard from different people that kids who had it tended to exhibit unreasonable violence. I didn’t know that vindictiveness was a particular feature.
I do feel that my daughter might have developed it more. Possibly. At some point we realized that the explosiveness tended to be a last resort form of communication and desire to find control in a bad situation. If we hadn’t become more empathetic it could have gone very badly. It made me wonder if, for some kids, ODD might develop due to the combination of communication and emotional regulation problems that can happen with autism. I definitely don’t mean to imply that this is the case with OP though., Get an advocate. If this is happening to you, something is wrong. Especially if there's an ongoing pattern, you have a case for a state complaint. Document every time this happens, in writing, to the school.
Most parents are embarrassed and automatically pick their child up - but that is doing the school's job for them. They get funding for your kid, they deny him services, and don't have to deal with the difficult stuff... It's a win for them! (how much OT, ST, etc. has he missed? You could request compensatory services in a state complaint to address that).
If they don't already have a behavior intervention plan, you can request that the social worker do an FBA to develop one. They are then supposed to follow that plan to try and reduce or redirect those behaviors. Honestly, if he has these behaviors, they should have developed one long ago.
And if they aren't following the BIP...you can file a state complaint. That is part of the IEP. If they continue just trying to send him home, state complaint.
It is hard. It often requires constant vigilance. I believe I have drafted over 500 e-mails this year to various people involved with my sons at the school. District heads will lie, lie, lie, and we parents have to be firm in our responses.
I requested an independent educational evaluation for my oldest, since the school's academic profile of him is flat-out wrong. They approved it. Now they are trying to put a bunch of conditions on it - evaluation has to be done in 30 days, there's a cap of $2500, etc. All they can really do is confirm the outside evaluators have the right credentials. They can't enforce the rest. So I had to email them the section from IDEA about that to let them know: if you try this, I will file a state complaint., If this happens at new school(btw he had new behavioural intervention plan made for school) and I have any questions that aren't getting answered I will look back at your info. I saved this to my phone., I believe you can follow me. I am not a formally trained advocate but have learned a lot from my advocate and a support group she runs. Schools sending kids home early is pervasive in my state (Michigan).
|
Just want her to be able to speak words already... 3yo babbler
|
She's 3yo and seeing other kids talking, being the normal (stereotypical?) child and it frustration that I cant probs won't ever hear her speak. 1yo she used to say some words like "hi 👋, bye 👋" then just nothing.... only random sounds.
I've read books, tried ms. Rachel (she hated it), and lucas and friends apps.
The services we tried wants a tablet device but insurance doesn't cover, and no pocket $. So I've been looking into tablet device speech apps hoping for a good free version. Weave and Pecs Phrases looks good I think?
Any recommendations?... would really appreciate them.
|
My son was babbling at 3. It turns out he was a gestalt language processor, which means he didn't learn words the way other kids do. He learned phrases. It's hard to string together whole phrases so he would do a lot of stops and starts. To us it sounded like meaningless babble, until we heard him blurt out longer and more recognizable bits. Ten years later, he's conversational now and we have a lot of fun talking. He's still behind socially and academically but he's rapidly catching up and going to class with his typically developing peers.
I can't tell you that the same thing will happen with your kiddo but I can say that it's not unusual for kids on the spectrum to regress at early ages and it's not necessarily a sign of things to come.
I don't have specific speech therapy apps to recommend but I will say that the app itself would be the third most important thing to me. The most important would be learning how to use the app by watching a speech therapist, followed closely by picking an app that your kid will pay attention to.
We used a very basic app called pogg that doesn't seem to exist anymore but all it did was have a silly green cartoon alien named pogg and a bunch of words. If you clicked on the word eat, pogg would say eat, then he'd eat a sandwich, a whole turkey, and the kitchen table. Silly stuff but my kid wanted to watch it again and again.
Watching the speech therapist, we learned how to make him work for it a little more. Instead of letting him hold the tablet we'd ask What do you want pogg to do? And if he pointed to eat we'd say eat? I want pogg to eat. Practicing and associating the word by itself and then in a simple sentence. Maybe say eat a couple times and see if they'll try to mimic you.
As we got more out of him, we'd use the same app but practice new things. Pogg is eating a sandwich. Pogg is eating a turkey. Pogg is eating the table? No pogg! What are you doing! Try to make it fun.
There are better speech apps today than a decade ago but the human component is still crucial. I would watch some speech therapist videos online and see what tools they use. I don't have a specific recommendation but this is a cute video that also shows the therapist getting down to the floor with her nephew, trying to get any sound at all from him, and using ritual and routine to try to expand on what he's learning. She does a good job explaining what she's trying to accomplish even in a seemingly basic play time.
https://youtu.be/XMi2PpY41xg?si=nGboEutjTXx0hk36
Good luck! , Keep modeling words and talking through and describing everything she's doing or focused on/interested in. It may not seem like she's hearing it, but she probably is. At first, she may only start understanding and gain receptive language but it's the start of expressive language and speaking. Consistently doing this every day has helped our son a little bit even if he's just repeating us sometimes. Good luck!, Just here to say I hear you! My boy is turning 3 next week and it’s exactly the same. Lots of noises and babbling, he “talks” to us when he wants something or to catch our attention so he clearly links making noises with communicating, but not a single word. He also used to say mom, dad, 💩, and a few others words at 1yo but then stopped saying them. I can only hope and encourage him to keep communicating however he finds it easier., There are plenty of free or low cost AAC apps! I used them for years before my son started typing to speak. Pay attention in April coming up many expensive ones go on sale in app store for ASD awareness month. LAMP Words for Life goes half off. My son prefers this app over any other.
But there are several.
If you try them, pay attention that she understands the PECS images. My son didn't when he was just starting AAC. I used apps that let me take my own photos instead of the line drawings. Then he took to the Let Me Talk app. It was hard though he still didn't want to use it much. Then one day he started typing on the keyboard for fun. I always follow his interest, so we moved onto typing instead. He uses it independently without prompts. His teacher says he's the best communicator in the class and he's nonverbal in a class of verbal kids. I guess I'm just trying to say if she ends up on AAC instead of spoken words, she will still learn to communicate functionally. But she's so young, so there's a big chance she'll gain more words!
Good luck to you both! , I have 2 kids, my daughter (NT) didn't start talking till she was 3 1/2yo. She literally had zero words. But she did make noises and grab my hand and lead me. It was her way of communicating. She's been in speech therapy since about 2.5yo. She's now 9 days away from her 4th birthday and she's finally got words! Anyway, if your kid is making noises - encourage that. That's how it started for us. Daniel Tiger was good, Ms Rachel.. (as much as I hate to say it - Blippy), Hey Duggee, Bluey... I don't know how much of those shows helped but she watched them happily. We tried to focus on a couple words at a time. Like "milk" or "snack"... it was like months of just trying to give her single words.
She has an IEP because of a hearing issue(microtia), but we get free OT and speech therapy through the state., I was in a similar spot but now my 3yo is starting to talk. We have her in preschool for asd kids and normal daycare. She likes watching Simple Songs on YouTube to learn songs, then we sing them for her. We have books with animals and she likes to point to the animals and watch us say the words. I have to talk to her A LOT. Narrate everything I’m doing. One day I dropped a jacket and said “oops I dropped it”. Then she just repeated “you dropped it” for several days.
I found out a week ago that she can count to ten on her own. We have to frustrate her by saying the numbers then stopping so she has to say them herself. Learning songs with a dance (head shoulders knees and toes) helps a lot. I don’t use a tablet but she has a little toy with alphabet buttons that say the letters when you press them. This helps her with the alphabet.
They know more than they say. Hope this helps., You could see if there is a Variety charity that serves your area. Although they can differ in what they offer ,ours gives away an ipad locked with an aac app as well as a few other things.
[Variety - The Children's Charity](https://variety.org/), My daughter just turned 3 Sunday. She's about the same she has a few words she can say and sometimes she'll say a new one and then not say it again for 2 months. 😅 I really wonder about apraxia sometimes. It's hard but I have faith well get there. We got the trial (2 months I think) of cough drop and she liked it actually so next month when they all go on sale I'm gonna get her either cough drop or proloqo., Not OP, but thank you sooooo much for taking the time to write this out! You are an absolute angel., We do talk out or I guess narration. Feels weird to do so though. "I want up please" "up" "tablet please" etc.
Bubbles. While reaching for bubble bottle I'll say "bubbles please" and then blow bubbles with the wand. Wait a bit and say bubbles please and do again., Nice to feel like someone else understands and not alone. Thanks for sharing!, I don't think I'm searching the correct app. Is it possible to get a pic of what the LAMP Words for Life app looks like?, My 3y 9m does the same! Babbles, no words, grabs hand and leads to area (like kitchen), so it's a guessing game if what she wants from there.
Her go-to shows are Little Baby Bum, Bluey, Cocomelon (sometimes). Moviewise, we finally got off the Encanto binge... don't get me wrong, I like the movie and songs, but constantly over and over, it gets old and a bit annoying.
We did have speech therapy going for her, didn't seem like anything was helping much? Was just I think 30mins / 1hr sessions. Might go for different services I don't know yet., my daughter who has just turned 3 loves Simple Songs on Youtube and within the past 3 weeks has started singing along to heads, shoulders knees and toes and also counting from 1 to 10. Came out of nowhere.. now she walks around counting to herself. She has also gotten to the letter C when saying her alphabet. A month ago other than saying the word horse a lot, she hadn't said a word for a very long time. It's nice to hear your child is doing similar! They certainly know more than they say. Best of luck to you, Simple Songs on YouTube! Yes! She also likes those videos too. While watching the Little Baby Bum heads , shoulders, knees, and toes clip (after so many times) She finally copies the knees and toes movement. Been months when I tried teaching her but suddenly when the characters do it and the fast oaced music, I guess helped?, Didn't know about this. Thank you!, We use the Rule of 3. Bubbles? You want Bubbles? Okay! Let's do Bubbles. More? *with more sign* You want more Bubbles? Let's do more Bubbles!
Help? You need help? Okay! Mama can help. It's exhausting but it does work., When your kid leads you to the kitchen- when you find the thing they want. Hold it up and say it out loud, repeat it a couple times. I had to kind of play dumb sometimes to make it so verbal communication was the most efficient way to communicate. (instead of immediately just giving the thing she wanted) I also would hold two things in my hands to give her a choice. "Milk?" or "cheese?". (Even though it was obvious she just wanted milk.) Eventually she got words, one at a time. And for a long time it felt like she understood a lot more then what she was actually saying.
Speech therapy imo did help. It also helped me as a parent to develop strategies and work on different things. I feel like we tried everything. In the end I'm not sure what worked and what didn't. Anyway just don't give up. The hand leading thing is communication, she is trying to communicate when doing that. So I'd start there., Right? I feel like I need to sound like the yellow fish from Finding Nemo. Bubbles! Lol, Thank you! I'll try that out! At some point I just lifted her on the counter to look in the pantry for what she wanted... instantly the mini kitkats. She gets all happy giggling as she runs away with them afterwards., For real though. 😅, aww haha, mine has a sweet tooth also! It can be a good motivator. good luck out there, Thank you!, My son was babbling at 3. It turns out he was a gestalt language processor, which means he didn't learn words the way other kids do. He learned phrases. It's hard to string together whole phrases so he would do a lot of stops and starts. To us it sounded like meaningless babble, until we heard him blurt out longer and more recognizable bits. Ten years later, he's conversational now and we have a lot of fun talking. He's still behind socially and academically but he's rapidly catching up and going to class with his typically developing peers.
I can't tell you that the same thing will happen with your kiddo but I can say that it's not unusual for kids on the spectrum to regress at early ages and it's not necessarily a sign of things to come.
I don't have specific speech therapy apps to recommend but I will say that the app itself would be the third most important thing to me. The most important would be learning how to use the app by watching a speech therapist, followed closely by picking an app that your kid will pay attention to.
We used a very basic app called pogg that doesn't seem to exist anymore but all it did was have a silly green cartoon alien named pogg and a bunch of words. If you clicked on the word eat, pogg would say eat, then he'd eat a sandwich, a whole turkey, and the kitchen table. Silly stuff but my kid wanted to watch it again and again.
Watching the speech therapist, we learned how to make him work for it a little more. Instead of letting him hold the tablet we'd ask What do you want pogg to do? And if he pointed to eat we'd say eat? I want pogg to eat. Practicing and associating the word by itself and then in a simple sentence. Maybe say eat a couple times and see if they'll try to mimic you.
As we got more out of him, we'd use the same app but practice new things. Pogg is eating a sandwich. Pogg is eating a turkey. Pogg is eating the table? No pogg! What are you doing! Try to make it fun.
There are better speech apps today than a decade ago but the human component is still crucial. I would watch some speech therapist videos online and see what tools they use. I don't have a specific recommendation but this is a cute video that also shows the therapist getting down to the floor with her nephew, trying to get any sound at all from him, and using ritual and routine to try to expand on what he's learning. She does a good job explaining what she's trying to accomplish even in a seemingly basic play time.
https://youtu.be/XMi2PpY41xg?si=nGboEutjTXx0hk36
Good luck! , Keep modeling words and talking through and describing everything she's doing or focused on/interested in. It may not seem like she's hearing it, but she probably is. At first, she may only start understanding and gain receptive language but it's the start of expressive language and speaking. Consistently doing this every day has helped our son a little bit even if he's just repeating us sometimes. Good luck!, Just here to say I hear you! My boy is turning 3 next week and it’s exactly the same. Lots of noises and babbling, he “talks” to us when he wants something or to catch our attention so he clearly links making noises with communicating, but not a single word. He also used to say mom, dad, 💩, and a few others words at 1yo but then stopped saying them. I can only hope and encourage him to keep communicating however he finds it easier., There are plenty of free or low cost AAC apps! I used them for years before my son started typing to speak. Pay attention in April coming up many expensive ones go on sale in app store for ASD awareness month. LAMP Words for Life goes half off. My son prefers this app over any other.
But there are several.
If you try them, pay attention that she understands the PECS images. My son didn't when he was just starting AAC. I used apps that let me take my own photos instead of the line drawings. Then he took to the Let Me Talk app. It was hard though he still didn't want to use it much. Then one day he started typing on the keyboard for fun. I always follow his interest, so we moved onto typing instead. He uses it independently without prompts. His teacher says he's the best communicator in the class and he's nonverbal in a class of verbal kids. I guess I'm just trying to say if she ends up on AAC instead of spoken words, she will still learn to communicate functionally. But she's so young, so there's a big chance she'll gain more words!
Good luck to you both! , I have 2 kids, my daughter (NT) didn't start talking till she was 3 1/2yo. She literally had zero words. But she did make noises and grab my hand and lead me. It was her way of communicating. She's been in speech therapy since about 2.5yo. She's now 9 days away from her 4th birthday and she's finally got words! Anyway, if your kid is making noises - encourage that. That's how it started for us. Daniel Tiger was good, Ms Rachel.. (as much as I hate to say it - Blippy), Hey Duggee, Bluey... I don't know how much of those shows helped but she watched them happily. We tried to focus on a couple words at a time. Like "milk" or "snack"... it was like months of just trying to give her single words.
She has an IEP because of a hearing issue(microtia), but we get free OT and speech therapy through the state., I was in a similar spot but now my 3yo is starting to talk. We have her in preschool for asd kids and normal daycare. She likes watching Simple Songs on YouTube to learn songs, then we sing them for her. We have books with animals and she likes to point to the animals and watch us say the words. I have to talk to her A LOT. Narrate everything I’m doing. One day I dropped a jacket and said “oops I dropped it”. Then she just repeated “you dropped it” for several days.
I found out a week ago that she can count to ten on her own. We have to frustrate her by saying the numbers then stopping so she has to say them herself. Learning songs with a dance (head shoulders knees and toes) helps a lot. I don’t use a tablet but she has a little toy with alphabet buttons that say the letters when you press them. This helps her with the alphabet.
They know more than they say. Hope this helps., You could see if there is a Variety charity that serves your area. Although they can differ in what they offer ,ours gives away an ipad locked with an aac app as well as a few other things.
[Variety - The Children's Charity](https://variety.org/), My daughter just turned 3 Sunday. She's about the same she has a few words she can say and sometimes she'll say a new one and then not say it again for 2 months. 😅 I really wonder about apraxia sometimes. It's hard but I have faith well get there. We got the trial (2 months I think) of cough drop and she liked it actually so next month when they all go on sale I'm gonna get her either cough drop or proloqo., Not OP, but thank you sooooo much for taking the time to write this out! You are an absolute angel., We do talk out or I guess narration. Feels weird to do so though. "I want up please" "up" "tablet please" etc.
Bubbles. While reaching for bubble bottle I'll say "bubbles please" and then blow bubbles with the wand. Wait a bit and say bubbles please and do again., Nice to feel like someone else understands and not alone. Thanks for sharing!, I don't think I'm searching the correct app. Is it possible to get a pic of what the LAMP Words for Life app looks like?, My 3y 9m does the same! Babbles, no words, grabs hand and leads to area (like kitchen), so it's a guessing game if what she wants from there.
Her go-to shows are Little Baby Bum, Bluey, Cocomelon (sometimes). Moviewise, we finally got off the Encanto binge... don't get me wrong, I like the movie and songs, but constantly over and over, it gets old and a bit annoying.
We did have speech therapy going for her, didn't seem like anything was helping much? Was just I think 30mins / 1hr sessions. Might go for different services I don't know yet., my daughter who has just turned 3 loves Simple Songs on Youtube and within the past 3 weeks has started singing along to heads, shoulders knees and toes and also counting from 1 to 10. Came out of nowhere.. now she walks around counting to herself. She has also gotten to the letter C when saying her alphabet. A month ago other than saying the word horse a lot, she hadn't said a word for a very long time. It's nice to hear your child is doing similar! They certainly know more than they say. Best of luck to you, Simple Songs on YouTube! Yes! She also likes those videos too. While watching the Little Baby Bum heads , shoulders, knees, and toes clip (after so many times) She finally copies the knees and toes movement. Been months when I tried teaching her but suddenly when the characters do it and the fast oaced music, I guess helped?, Didn't know about this. Thank you!, We use the Rule of 3. Bubbles? You want Bubbles? Okay! Let's do Bubbles. More? *with more sign* You want more Bubbles? Let's do more Bubbles!
Help? You need help? Okay! Mama can help. It's exhausting but it does work., When your kid leads you to the kitchen- when you find the thing they want. Hold it up and say it out loud, repeat it a couple times. I had to kind of play dumb sometimes to make it so verbal communication was the most efficient way to communicate. (instead of immediately just giving the thing she wanted) I also would hold two things in my hands to give her a choice. "Milk?" or "cheese?". (Even though it was obvious she just wanted milk.) Eventually she got words, one at a time. And for a long time it felt like she understood a lot more then what she was actually saying.
Speech therapy imo did help. It also helped me as a parent to develop strategies and work on different things. I feel like we tried everything. In the end I'm not sure what worked and what didn't. Anyway just don't give up. The hand leading thing is communication, she is trying to communicate when doing that. So I'd start there., Right? I feel like I need to sound like the yellow fish from Finding Nemo. Bubbles! Lol, Thank you! I'll try that out! At some point I just lifted her on the counter to look in the pantry for what she wanted... instantly the mini kitkats. She gets all happy giggling as she runs away with them afterwards., For real though. 😅, aww haha, mine has a sweet tooth also! It can be a good motivator. good luck out there, Thank you!, My son was babbling at 3. It turns out he was a gestalt language processor, which means he didn't learn words the way other kids do. He learned phrases. It's hard to string together whole phrases so he would do a lot of stops and starts. To us it sounded like meaningless babble, until we heard him blurt out longer and more recognizable bits. Ten years later, he's conversational now and we have a lot of fun talking. He's still behind socially and academically but he's rapidly catching up and going to class with his typically developing peers.
I can't tell you that the same thing will happen with your kiddo but I can say that it's not unusual for kids on the spectrum to regress at early ages and it's not necessarily a sign of things to come.
I don't have specific speech therapy apps to recommend but I will say that the app itself would be the third most important thing to me. The most important would be learning how to use the app by watching a speech therapist, followed closely by picking an app that your kid will pay attention to.
We used a very basic app called pogg that doesn't seem to exist anymore but all it did was have a silly green cartoon alien named pogg and a bunch of words. If you clicked on the word eat, pogg would say eat, then he'd eat a sandwich, a whole turkey, and the kitchen table. Silly stuff but my kid wanted to watch it again and again.
Watching the speech therapist, we learned how to make him work for it a little more. Instead of letting him hold the tablet we'd ask What do you want pogg to do? And if he pointed to eat we'd say eat? I want pogg to eat. Practicing and associating the word by itself and then in a simple sentence. Maybe say eat a couple times and see if they'll try to mimic you.
As we got more out of him, we'd use the same app but practice new things. Pogg is eating a sandwich. Pogg is eating a turkey. Pogg is eating the table? No pogg! What are you doing! Try to make it fun.
There are better speech apps today than a decade ago but the human component is still crucial. I would watch some speech therapist videos online and see what tools they use. I don't have a specific recommendation but this is a cute video that also shows the therapist getting down to the floor with her nephew, trying to get any sound at all from him, and using ritual and routine to try to expand on what he's learning. She does a good job explaining what she's trying to accomplish even in a seemingly basic play time.
https://youtu.be/XMi2PpY41xg?si=nGboEutjTXx0hk36
Good luck! , Keep modeling words and talking through and describing everything she's doing or focused on/interested in. It may not seem like she's hearing it, but she probably is. At first, she may only start understanding and gain receptive language but it's the start of expressive language and speaking. Consistently doing this every day has helped our son a little bit even if he's just repeating us sometimes. Good luck!, Just here to say I hear you! My boy is turning 3 next week and it’s exactly the same. Lots of noises and babbling, he “talks” to us when he wants something or to catch our attention so he clearly links making noises with communicating, but not a single word. He also used to say mom, dad, 💩, and a few others words at 1yo but then stopped saying them. I can only hope and encourage him to keep communicating however he finds it easier., There are plenty of free or low cost AAC apps! I used them for years before my son started typing to speak. Pay attention in April coming up many expensive ones go on sale in app store for ASD awareness month. LAMP Words for Life goes half off. My son prefers this app over any other.
But there are several.
If you try them, pay attention that she understands the PECS images. My son didn't when he was just starting AAC. I used apps that let me take my own photos instead of the line drawings. Then he took to the Let Me Talk app. It was hard though he still didn't want to use it much. Then one day he started typing on the keyboard for fun. I always follow his interest, so we moved onto typing instead. He uses it independently without prompts. His teacher says he's the best communicator in the class and he's nonverbal in a class of verbal kids. I guess I'm just trying to say if she ends up on AAC instead of spoken words, she will still learn to communicate functionally. But she's so young, so there's a big chance she'll gain more words!
Good luck to you both! , I have 2 kids, my daughter (NT) didn't start talking till she was 3 1/2yo. She literally had zero words. But she did make noises and grab my hand and lead me. It was her way of communicating. She's been in speech therapy since about 2.5yo. She's now 9 days away from her 4th birthday and she's finally got words! Anyway, if your kid is making noises - encourage that. That's how it started for us. Daniel Tiger was good, Ms Rachel.. (as much as I hate to say it - Blippy), Hey Duggee, Bluey... I don't know how much of those shows helped but she watched them happily. We tried to focus on a couple words at a time. Like "milk" or "snack"... it was like months of just trying to give her single words.
She has an IEP because of a hearing issue(microtia), but we get free OT and speech therapy through the state., I was in a similar spot but now my 3yo is starting to talk. We have her in preschool for asd kids and normal daycare. She likes watching Simple Songs on YouTube to learn songs, then we sing them for her. We have books with animals and she likes to point to the animals and watch us say the words. I have to talk to her A LOT. Narrate everything I’m doing. One day I dropped a jacket and said “oops I dropped it”. Then she just repeated “you dropped it” for several days.
I found out a week ago that she can count to ten on her own. We have to frustrate her by saying the numbers then stopping so she has to say them herself. Learning songs with a dance (head shoulders knees and toes) helps a lot. I don’t use a tablet but she has a little toy with alphabet buttons that say the letters when you press them. This helps her with the alphabet.
They know more than they say. Hope this helps., You could see if there is a Variety charity that serves your area. Although they can differ in what they offer ,ours gives away an ipad locked with an aac app as well as a few other things.
[Variety - The Children's Charity](https://variety.org/), My daughter just turned 3 Sunday. She's about the same she has a few words she can say and sometimes she'll say a new one and then not say it again for 2 months. 😅 I really wonder about apraxia sometimes. It's hard but I have faith well get there. We got the trial (2 months I think) of cough drop and she liked it actually so next month when they all go on sale I'm gonna get her either cough drop or proloqo., Not OP, but thank you sooooo much for taking the time to write this out! You are an absolute angel., We do talk out or I guess narration. Feels weird to do so though. "I want up please" "up" "tablet please" etc.
Bubbles. While reaching for bubble bottle I'll say "bubbles please" and then blow bubbles with the wand. Wait a bit and say bubbles please and do again., Nice to feel like someone else understands and not alone. Thanks for sharing!, I don't think I'm searching the correct app. Is it possible to get a pic of what the LAMP Words for Life app looks like?, My 3y 9m does the same! Babbles, no words, grabs hand and leads to area (like kitchen), so it's a guessing game if what she wants from there.
Her go-to shows are Little Baby Bum, Bluey, Cocomelon (sometimes). Moviewise, we finally got off the Encanto binge... don't get me wrong, I like the movie and songs, but constantly over and over, it gets old and a bit annoying.
We did have speech therapy going for her, didn't seem like anything was helping much? Was just I think 30mins / 1hr sessions. Might go for different services I don't know yet., my daughter who has just turned 3 loves Simple Songs on Youtube and within the past 3 weeks has started singing along to heads, shoulders knees and toes and also counting from 1 to 10. Came out of nowhere.. now she walks around counting to herself. She has also gotten to the letter C when saying her alphabet. A month ago other than saying the word horse a lot, she hadn't said a word for a very long time. It's nice to hear your child is doing similar! They certainly know more than they say. Best of luck to you, Simple Songs on YouTube! Yes! She also likes those videos too. While watching the Little Baby Bum heads , shoulders, knees, and toes clip (after so many times) She finally copies the knees and toes movement. Been months when I tried teaching her but suddenly when the characters do it and the fast oaced music, I guess helped?, Didn't know about this. Thank you!, We use the Rule of 3. Bubbles? You want Bubbles? Okay! Let's do Bubbles. More? *with more sign* You want more Bubbles? Let's do more Bubbles!
Help? You need help? Okay! Mama can help. It's exhausting but it does work., When your kid leads you to the kitchen- when you find the thing they want. Hold it up and say it out loud, repeat it a couple times. I had to kind of play dumb sometimes to make it so verbal communication was the most efficient way to communicate. (instead of immediately just giving the thing she wanted) I also would hold two things in my hands to give her a choice. "Milk?" or "cheese?". (Even though it was obvious she just wanted milk.) Eventually she got words, one at a time. And for a long time it felt like she understood a lot more then what she was actually saying.
Speech therapy imo did help. It also helped me as a parent to develop strategies and work on different things. I feel like we tried everything. In the end I'm not sure what worked and what didn't. Anyway just don't give up. The hand leading thing is communication, she is trying to communicate when doing that. So I'd start there., Right? I feel like I need to sound like the yellow fish from Finding Nemo. Bubbles! Lol, Thank you! I'll try that out! At some point I just lifted her on the counter to look in the pantry for what she wanted... instantly the mini kitkats. She gets all happy giggling as she runs away with them afterwards., For real though. 😅, aww haha, mine has a sweet tooth also! It can be a good motivator. good luck out there, Thank you!, My son was babbling at 3. It turns out he was a gestalt language processor, which means he didn't learn words the way other kids do. He learned phrases. It's hard to string together whole phrases so he would do a lot of stops and starts. To us it sounded like meaningless babble, until we heard him blurt out longer and more recognizable bits. Ten years later, he's conversational now and we have a lot of fun talking. He's still behind socially and academically but he's rapidly catching up and going to class with his typically developing peers.
I can't tell you that the same thing will happen with your kiddo but I can say that it's not unusual for kids on the spectrum to regress at early ages and it's not necessarily a sign of things to come.
I don't have specific speech therapy apps to recommend but I will say that the app itself would be the third most important thing to me. The most important would be learning how to use the app by watching a speech therapist, followed closely by picking an app that your kid will pay attention to.
We used a very basic app called pogg that doesn't seem to exist anymore but all it did was have a silly green cartoon alien named pogg and a bunch of words. If you clicked on the word eat, pogg would say eat, then he'd eat a sandwich, a whole turkey, and the kitchen table. Silly stuff but my kid wanted to watch it again and again.
Watching the speech therapist, we learned how to make him work for it a little more. Instead of letting him hold the tablet we'd ask What do you want pogg to do? And if he pointed to eat we'd say eat? I want pogg to eat. Practicing and associating the word by itself and then in a simple sentence. Maybe say eat a couple times and see if they'll try to mimic you.
As we got more out of him, we'd use the same app but practice new things. Pogg is eating a sandwich. Pogg is eating a turkey. Pogg is eating the table? No pogg! What are you doing! Try to make it fun.
There are better speech apps today than a decade ago but the human component is still crucial. I would watch some speech therapist videos online and see what tools they use. I don't have a specific recommendation but this is a cute video that also shows the therapist getting down to the floor with her nephew, trying to get any sound at all from him, and using ritual and routine to try to expand on what he's learning. She does a good job explaining what she's trying to accomplish even in a seemingly basic play time.
https://youtu.be/XMi2PpY41xg?si=nGboEutjTXx0hk36
Good luck! , Keep modeling words and talking through and describing everything she's doing or focused on/interested in. It may not seem like she's hearing it, but she probably is. At first, she may only start understanding and gain receptive language but it's the start of expressive language and speaking. Consistently doing this every day has helped our son a little bit even if he's just repeating us sometimes. Good luck!, Just here to say I hear you! My boy is turning 3 next week and it’s exactly the same. Lots of noises and babbling, he “talks” to us when he wants something or to catch our attention so he clearly links making noises with communicating, but not a single word. He also used to say mom, dad, 💩, and a few others words at 1yo but then stopped saying them. I can only hope and encourage him to keep communicating however he finds it easier., There are plenty of free or low cost AAC apps! I used them for years before my son started typing to speak. Pay attention in April coming up many expensive ones go on sale in app store for ASD awareness month. LAMP Words for Life goes half off. My son prefers this app over any other.
But there are several.
If you try them, pay attention that she understands the PECS images. My son didn't when he was just starting AAC. I used apps that let me take my own photos instead of the line drawings. Then he took to the Let Me Talk app. It was hard though he still didn't want to use it much. Then one day he started typing on the keyboard for fun. I always follow his interest, so we moved onto typing instead. He uses it independently without prompts. His teacher says he's the best communicator in the class and he's nonverbal in a class of verbal kids. I guess I'm just trying to say if she ends up on AAC instead of spoken words, she will still learn to communicate functionally. But she's so young, so there's a big chance she'll gain more words!
Good luck to you both! , I have 2 kids, my daughter (NT) didn't start talking till she was 3 1/2yo. She literally had zero words. But she did make noises and grab my hand and lead me. It was her way of communicating. She's been in speech therapy since about 2.5yo. She's now 9 days away from her 4th birthday and she's finally got words! Anyway, if your kid is making noises - encourage that. That's how it started for us. Daniel Tiger was good, Ms Rachel.. (as much as I hate to say it - Blippy), Hey Duggee, Bluey... I don't know how much of those shows helped but she watched them happily. We tried to focus on a couple words at a time. Like "milk" or "snack"... it was like months of just trying to give her single words.
She has an IEP because of a hearing issue(microtia), but we get free OT and speech therapy through the state., I was in a similar spot but now my 3yo is starting to talk. We have her in preschool for asd kids and normal daycare. She likes watching Simple Songs on YouTube to learn songs, then we sing them for her. We have books with animals and she likes to point to the animals and watch us say the words. I have to talk to her A LOT. Narrate everything I’m doing. One day I dropped a jacket and said “oops I dropped it”. Then she just repeated “you dropped it” for several days.
I found out a week ago that she can count to ten on her own. We have to frustrate her by saying the numbers then stopping so she has to say them herself. Learning songs with a dance (head shoulders knees and toes) helps a lot. I don’t use a tablet but she has a little toy with alphabet buttons that say the letters when you press them. This helps her with the alphabet.
They know more than they say. Hope this helps., You could see if there is a Variety charity that serves your area. Although they can differ in what they offer ,ours gives away an ipad locked with an aac app as well as a few other things.
[Variety - The Children's Charity](https://variety.org/), My daughter just turned 3 Sunday. She's about the same she has a few words she can say and sometimes she'll say a new one and then not say it again for 2 months. 😅 I really wonder about apraxia sometimes. It's hard but I have faith well get there. We got the trial (2 months I think) of cough drop and she liked it actually so next month when they all go on sale I'm gonna get her either cough drop or proloqo., Not OP, but thank you sooooo much for taking the time to write this out! You are an absolute angel., We do talk out or I guess narration. Feels weird to do so though. "I want up please" "up" "tablet please" etc.
Bubbles. While reaching for bubble bottle I'll say "bubbles please" and then blow bubbles with the wand. Wait a bit and say bubbles please and do again., Nice to feel like someone else understands and not alone. Thanks for sharing!, I don't think I'm searching the correct app. Is it possible to get a pic of what the LAMP Words for Life app looks like?, My 3y 9m does the same! Babbles, no words, grabs hand and leads to area (like kitchen), so it's a guessing game if what she wants from there.
Her go-to shows are Little Baby Bum, Bluey, Cocomelon (sometimes). Moviewise, we finally got off the Encanto binge... don't get me wrong, I like the movie and songs, but constantly over and over, it gets old and a bit annoying.
We did have speech therapy going for her, didn't seem like anything was helping much? Was just I think 30mins / 1hr sessions. Might go for different services I don't know yet., my daughter who has just turned 3 loves Simple Songs on Youtube and within the past 3 weeks has started singing along to heads, shoulders knees and toes and also counting from 1 to 10. Came out of nowhere.. now she walks around counting to herself. She has also gotten to the letter C when saying her alphabet. A month ago other than saying the word horse a lot, she hadn't said a word for a very long time. It's nice to hear your child is doing similar! They certainly know more than they say. Best of luck to you, Simple Songs on YouTube! Yes! She also likes those videos too. While watching the Little Baby Bum heads , shoulders, knees, and toes clip (after so many times) She finally copies the knees and toes movement. Been months when I tried teaching her but suddenly when the characters do it and the fast oaced music, I guess helped?, Didn't know about this. Thank you!, We use the Rule of 3. Bubbles? You want Bubbles? Okay! Let's do Bubbles. More? *with more sign* You want more Bubbles? Let's do more Bubbles!
Help? You need help? Okay! Mama can help. It's exhausting but it does work., When your kid leads you to the kitchen- when you find the thing they want. Hold it up and say it out loud, repeat it a couple times. I had to kind of play dumb sometimes to make it so verbal communication was the most efficient way to communicate. (instead of immediately just giving the thing she wanted) I also would hold two things in my hands to give her a choice. "Milk?" or "cheese?". (Even though it was obvious she just wanted milk.) Eventually she got words, one at a time. And for a long time it felt like she understood a lot more then what she was actually saying.
Speech therapy imo did help. It also helped me as a parent to develop strategies and work on different things. I feel like we tried everything. In the end I'm not sure what worked and what didn't. Anyway just don't give up. The hand leading thing is communication, she is trying to communicate when doing that. So I'd start there., Right? I feel like I need to sound like the yellow fish from Finding Nemo. Bubbles! Lol, Thank you! I'll try that out! At some point I just lifted her on the counter to look in the pantry for what she wanted... instantly the mini kitkats. She gets all happy giggling as she runs away with them afterwards., For real though. 😅, aww haha, mine has a sweet tooth also! It can be a good motivator. good luck out there, Thank you!
|
Kaiser and autism services
|
I complained last year to my HR about our health insurance options and their response is to potentially switch to a Kaiser HMO (ugh). A large part of my complaint was surrounding services for my autistic child.
My understanding is that Kaiser is very pro-ABA, and they limit or deny OT and SLP services until you have gone through ABA. This is a non-starter for me, but I'm looking for "reliable" sources that I can share with work that speaks to Kaiser's inadequacy surrounding care for autistic folks. Unfortunately social media posts won't really cut it -- I'm really looking for news articles about Kaiser complaints, or statements from ND-affirming/autism organizations speaking out against Kaiser.
Please no discussion on pros/cons of ABA. I am also aware of their crappy record on mental health. I'm really looking for more "formal" sources specifically on Kaiser's services surrounding autism.
|
SoCal Kaiser here. This is not accurate in my experience. We have OT and speech authorized through Kaiser and we do not do ABA., This hasn’t been my experience with Kaiser at all. We’ve been approved for ABA, OT and speech. If anything, they’ve been far more accommodating than our friends who have Blue Cross., Regardless they should give you more options!, I have not had your experience with Kaiser. We have been approved for OT, speech, and ABA but ABA wasn't pushed as the first/only option. Overall we've been much happier with Kaiser then Blue Cross, however I suspect the local area/management/policies might play into the experience.
It appears that you are looking for hit pieces on Kaiser and not actual experiences from people using the services? I might caution that \*all\* insurance providers and \*all\* practitioners are going to have vocal detractors regarding any of their offerings, so deciding medical treatment based solely on the "squeakiest wheel" might not be the best course of action, or at least wouldn't be for me., NorCal Kaiser here- my son was diagnosed at 3, but has speech and OT separate from ABA. We did ABA until he didn’t need it anymore, but no services were contingent on accepting ABA. The thing I found super helpful about Kaiser is that they found me placements, and I didn’t have to be on several year long wait lists for services. I don’t have any desire to change insurance, and have found everyone to be super supportive of both my autistic son, and me as his parent to make sure I’m not burning out., Got it. I’m in NorCal, and the feedback I’ve received from other parents through social media is that they push ABA before considering other services. Overall it seems very non-ND-affirming, Pretty much every doctor I’ve had there, with the exception of the developmental pediatrician, has asked us if we’re doing ABA. I do think it’s just their standard thing they recommend. But I just tell them no, we are philosophically opposed to that. (Some have been intrigued enough to ask why!) it’s also possible that NorCal has different policies than SoCal on this. Our services all came through an outside vendor (Easter Seals which then referred us to other providers) so their approach in-house has not been that consequential for the services we actually get., SoCal Kaiser here. This is not accurate in my experience. We have OT and speech authorized through Kaiser and we do not do ABA., This hasn’t been my experience with Kaiser at all. We’ve been approved for ABA, OT and speech. If anything, they’ve been far more accommodating than our friends who have Blue Cross., Regardless they should give you more options!, I have not had your experience with Kaiser. We have been approved for OT, speech, and ABA but ABA wasn't pushed as the first/only option. Overall we've been much happier with Kaiser then Blue Cross, however I suspect the local area/management/policies might play into the experience.
It appears that you are looking for hit pieces on Kaiser and not actual experiences from people using the services? I might caution that \*all\* insurance providers and \*all\* practitioners are going to have vocal detractors regarding any of their offerings, so deciding medical treatment based solely on the "squeakiest wheel" might not be the best course of action, or at least wouldn't be for me., NorCal Kaiser here- my son was diagnosed at 3, but has speech and OT separate from ABA. We did ABA until he didn’t need it anymore, but no services were contingent on accepting ABA. The thing I found super helpful about Kaiser is that they found me placements, and I didn’t have to be on several year long wait lists for services. I don’t have any desire to change insurance, and have found everyone to be super supportive of both my autistic son, and me as his parent to make sure I’m not burning out., Got it. I’m in NorCal, and the feedback I’ve received from other parents through social media is that they push ABA before considering other services. Overall it seems very non-ND-affirming, Pretty much every doctor I’ve had there, with the exception of the developmental pediatrician, has asked us if we’re doing ABA. I do think it’s just their standard thing they recommend. But I just tell them no, we are philosophically opposed to that. (Some have been intrigued enough to ask why!) it’s also possible that NorCal has different policies than SoCal on this. Our services all came through an outside vendor (Easter Seals which then referred us to other providers) so their approach in-house has not been that consequential for the services we actually get., SoCal Kaiser here. This is not accurate in my experience. We have OT and speech authorized through Kaiser and we do not do ABA., This hasn’t been my experience with Kaiser at all. We’ve been approved for ABA, OT and speech. If anything, they’ve been far more accommodating than our friends who have Blue Cross., Regardless they should give you more options!, I have not had your experience with Kaiser. We have been approved for OT, speech, and ABA but ABA wasn't pushed as the first/only option. Overall we've been much happier with Kaiser then Blue Cross, however I suspect the local area/management/policies might play into the experience.
It appears that you are looking for hit pieces on Kaiser and not actual experiences from people using the services? I might caution that \*all\* insurance providers and \*all\* practitioners are going to have vocal detractors regarding any of their offerings, so deciding medical treatment based solely on the "squeakiest wheel" might not be the best course of action, or at least wouldn't be for me., NorCal Kaiser here- my son was diagnosed at 3, but has speech and OT separate from ABA. We did ABA until he didn’t need it anymore, but no services were contingent on accepting ABA. The thing I found super helpful about Kaiser is that they found me placements, and I didn’t have to be on several year long wait lists for services. I don’t have any desire to change insurance, and have found everyone to be super supportive of both my autistic son, and me as his parent to make sure I’m not burning out., Got it. I’m in NorCal, and the feedback I’ve received from other parents through social media is that they push ABA before considering other services. Overall it seems very non-ND-affirming, Pretty much every doctor I’ve had there, with the exception of the developmental pediatrician, has asked us if we’re doing ABA. I do think it’s just their standard thing they recommend. But I just tell them no, we are philosophically opposed to that. (Some have been intrigued enough to ask why!) it’s also possible that NorCal has different policies than SoCal on this. Our services all came through an outside vendor (Easter Seals which then referred us to other providers) so their approach in-house has not been that consequential for the services we actually get., SoCal Kaiser here. This is not accurate in my experience. We have OT and speech authorized through Kaiser and we do not do ABA., This hasn’t been my experience with Kaiser at all. We’ve been approved for ABA, OT and speech. If anything, they’ve been far more accommodating than our friends who have Blue Cross., Regardless they should give you more options!, I have not had your experience with Kaiser. We have been approved for OT, speech, and ABA but ABA wasn't pushed as the first/only option. Overall we've been much happier with Kaiser then Blue Cross, however I suspect the local area/management/policies might play into the experience.
It appears that you are looking for hit pieces on Kaiser and not actual experiences from people using the services? I might caution that \*all\* insurance providers and \*all\* practitioners are going to have vocal detractors regarding any of their offerings, so deciding medical treatment based solely on the "squeakiest wheel" might not be the best course of action, or at least wouldn't be for me., NorCal Kaiser here- my son was diagnosed at 3, but has speech and OT separate from ABA. We did ABA until he didn’t need it anymore, but no services were contingent on accepting ABA. The thing I found super helpful about Kaiser is that they found me placements, and I didn’t have to be on several year long wait lists for services. I don’t have any desire to change insurance, and have found everyone to be super supportive of both my autistic son, and me as his parent to make sure I’m not burning out., Got it. I’m in NorCal, and the feedback I’ve received from other parents through social media is that they push ABA before considering other services. Overall it seems very non-ND-affirming, Pretty much every doctor I’ve had there, with the exception of the developmental pediatrician, has asked us if we’re doing ABA. I do think it’s just their standard thing they recommend. But I just tell them no, we are philosophically opposed to that. (Some have been intrigued enough to ask why!) it’s also possible that NorCal has different policies than SoCal on this. Our services all came through an outside vendor (Easter Seals which then referred us to other providers) so their approach in-house has not been that consequential for the services we actually get.
|
Karen downstairs can’t stand the noise my son makes.
|
Today, my son got home from school. He’s 20 with autism and brain damage. He’s non verbal, and when he’s not at school during the week, he goes to a dayhab. Well he squeals a lot when he’s happy, and screams and hits himself when he’s mad. He was squeaking this afternoon, when the lady downstairs started going around her apartment banging on the ceiling. My wife steps outside for a minute and the lady comes out screaming about noise, and cussing my wife out.
We aren’t sure what we can do really, what does she want? We can’t muzzle him. 😓
|
Especially in apartments, sometimes there's just conflicting access needs. Constant noise can be hard for some people to deal with, especially if they have other conditions like sensory processing disorder, migraines or PTSD - just how your son isn't choosing to make noise to bother her, she probably isn't choosing to have it bother her. She shouldn't have reacted the way she did but that can be hard when you're overwhelmed.
If you think that'll be helpful you could try sitting down and talking this through with her when everyone has calmed down- explain that your son has a disability and can't help it, and ask if there's anything to make it easier on her., It’s an unfortunate situation. Neighbors noise can really ruin someone’s life. I understand your situation but maybe she’s not a Karen, just someone trying to live comfortably, who has had enough. Your child is not her child. Insensitive as it may be, she’s allowed to be upset. This sounds like a no win situation and one of you may need to move. She shouldn’t be an asshole or throwing fits at you but clearly she’s reached a breaking point., Could you better noise insulate his room? There’s foam that you attach to the walls and flooring that will help reduce noise. It’s not a permanent or always solution but if things get unreasonable loud you could always put him in his room (safe place and haven), Honestly, there's not much she can do. It's a disability. And I say this as a parent whose child routinely verbally stimms late at night. There's only so much you can do. You've got some great suggestions on how to approach this but I'd add the dates and interactions you've had with her that way if she escalates to the leasing office or police you have a record to refer back to.
​
Solidarity., I'm sorry, it sucks so much. In a similar situation, we ended up having to move. The harassment was too much to take.
According to our former across the street neighbours, who witnessed our next door neighbours EGREGIOUS behaviour (screaming at us in the street, ironically annoying THE ENTIRE neighbourhood) a few months later after we moved the harasser dropped dead of heart attack in the middle of the street. Hard not to consider it karma.
With our new neighbours we left them a note letting them know our son was autistic, and they've been nothing but kind.
I think it helps they're young adults who have loud parties, we basically have a "noise is cool" kind of truce. We don't complain about theirs, they don't complain about ours. The former neighbours were older and went to bed super early.
Now our rent is un-affordable though, the old place was cheaper :(., To offer an alternative perspective, I have CPTSD from past trauma and listening to someone making screaming-type noises through my ceiling for hours every day would be extremely difficult for me to deal with. That doesn't give your neighbor a free pass to be a jerk, of course, but it might be helpful to try to think about it from her point of view, especially if she doesn't really know much about your son or people with autism., NAH. Apartment living can be hard for this reason. I don't like that the downstairs neighbor was cussing your wife out - she can't expect 100% silence out of you, all day.
I hope you can reach some sort of understanding., Dude does she know about your sons condition? We had a similar situation when we were renting. I left a note on their door like:
Sorry for the noise but our son has ___ and struggles with ___. We’re doing everything we can. Banging on the ceiling (or in your case, yelling at my wife) is not going to help the situation at all.
She can deal with it or move. I’m often an OVERLY considerate person in general, but when it comes to some shit like this, I say take care of your family and fuck everyone else, There’s really no talking to her at this point. The last time she threw a fit, she snuck up to our door trying to peak into my sons room. She got caught because my wife was going out the door to the trash. After her first fit, she came back and apologized., Could you offer to get her some acoustic foam panels which help to absorb sound?, This lady sucks. I don’t care how noisy your son is, you don’t get to act like that. You’re not blasting music or building furniture at 2 am.
I doubt very highly people would be defending this women’s actions and attitude if you had a crying baby. You and your wife can no more stop his noises than you could a crying baby.
When you live in a shared space there is sometimes noise. That’s the way it goes.
Do what you reasonably can to help with noise, but your son has a right to exist. I would report her to the landlord if there is anymore creepy behavior or harassment., Maybe you can gift her some earplugs ? Along with a note explaining the situation and thanking them for being understanding and patient, Does your apartment complex have monthly/quarterly meetings? Maybe bring up this issue and through mediation, the noise issue can be resolved with some of the suggestions others have posted, rugs, foam etc.
It's not easy dealing with an autistic non verbal child, I do hope one day your neighbor can see (and empathize) what wonderful parents you are trying to cater for your son 😊, This situation is tough, and I've been through it many times. My family has been blessed not to be burdened with apartment living anymore. However, the housing market is unfair, and in the Portland Metro-area, more multifamily homes are being built as opposed to single family homes. We bought a townhouse. We have neighbors who rent the townhouses on both sides of the home we own. It's great not having to deal with the infamous downstairs neighbor that is bothered by every footstep, let alone any extra noise my child with ASD makes. I have 5 children total ranging in ages of 4-16. My youngest is a level 3 autist.
One neighbor has a baby, and the other neighbors have 4 or 5 children, ranging in ages 7-16. I think there is some sort of unspoken understanding that kids (and teens) will be kids. That noise is inevitable. I can hear their teens late into the night. It's whatever. I have earplugs for sleep.
One night, my youngest had a meltdown and was cream crying at the top of her lungs. The neighbors with all the kids started banging on their walls over it, upsetting an already upset child. I'm still unsure if it was one of their children or the parents themselves. It upset me enough that I posted on the HOA message board that we have a child with developmental disabilities and let everyone read on what a day in our lives looks like. These meltdowns are unavoidable and uncontrollable at times. There's not a single thing we can do to change how our child feels during these moments. That we do our level best to redirect these moments. That we are often isolated as a family. The stress that we all deal with. I ended by asking for support and understanding. And we had some great responses from some nearby neighbors. Not the ones who were so greatly affected (because they do not own, they don't have access to the HOA message board- but their landlords do).
Anyway, forget all the Karen's on here that say it's our burden. It takes a village to raise a child. Sometimes, it is a simple conversation, perhaps with baked teeats, a gift basket with wine (or a joint if you live in a Marijuana legal state), and ear plugs is all it takes. Don't force your kid to meet the neighbor if it's beyond their comfort zone. I feel your post. At the end of the day, we are all doing our level best to do what's best for our children, ND and NT alike.
I've heard that there are acoustic foam panels that are fairly priced on Amazon that help with reducing noise. We haven't tried yet because, knowing my child, it will get picked off the walls and more than likely chewed on! But if this is not an issue with your child, it is definitely worth looking into.
Good luck, and know you always have a supportive friend here!, Yeah - apartment living sucks in general - we once got a noise complaint for “having too much fun at night” in our old apartment. We were out of town and our cat was home alone…
People suck. We moved into a townhouse to avoid downstairs neighbors…. Just too much hassle. Do you own or rent? If you’re considering moving I’d look for a 1st floor apt to avoid having to deal with people complaining about noise in the freakin afternoon…
No other good advice sorry, I’d make her a care / apology package. Give her some stuff to deal with the noise / increase her understanding / chocolate, Record her with your phone and get the cops involved. If you can’t move and she won’t move and she’s harassing members of your family there aren’t too many options, Since you obviously can't do anything about the noise, the best thing would to go and talk with her and explain the situation and how it is out of your control.
Having a little open honest communication with someone you have to live next to is probably the best solution. Once she fully understands the situation maybe she can be more understanding. Because without communication and knowledge maybe she is just assuming the worst and thinking the noise is purposeful which is making her reactions so extreme., I mean, I don’t think she’s being a Karen. Living with someone in a apartment with autism is definitely not easy because obviously you have to worry about the amount of noise they make. I’m not sure if you’re trying to stop him from screaming and hitting himself and trying to divert his anger into something positive or redirecting. It’s just a bad situation to be in and I recall some tenants having to be forced to move out of their apartment from the amount of noise coming from their units. I definitely understand your situation as well as your neighbors. Do they know he’s autistic? Not sure if explaining to them will help the situation., Direct her to the Americans with Disabilities Act and tell her she can complain, but no one would care to listen..., This response from her is not appropriate. However is the neighbor aware that your son is disabled? That might make her more understanding. Who knows what it sounds like through her wall, it could sound like someone arguing/yelling at their partner incessantly or very bad singing. Personally I would be a lot more understanding of incessant noise if I knew it was due to a disability and couldn’t be helped. When I lived in apartments I’ve had neighbors who have dogs constantly barking even in the middle of the night, it’s just something that happens when you live in close quarters with others.
I would apologize and let her know the situation. See what comes of that. It may be the case that they have to move somewhere where they won’t be so close to neighbors or try a different apartment building., What does she want you to do? Move. To imply that a neighbor expects you to muzzle your "child" is ridiculous. If there is an aspect of your life that makes life for your neighbor unbearable, move. You are the problem not her. If you can't abide by apartment rules, don't live in an apartment. It doesn't look good on you that you went to name calling. She has a right to peaceful enjoyment of the apartment she pays for. You have most likely pushed her to the point of losing it. Have you considered that she suffered and suffered until she lost it? I can guarantee from your description of your son that she did. , I see your point, maybe not a Karen. I was just upset about the situation. Moving really isn’t an option at the moment. We’ve been in this apartment since 2014, it’s the cheapest one in this area., Yes, we are in this situation and it sucks. My downstairs neighbor screamed at me like an unhinged psycho and scared my kids and I don't forgive her but I get it. My autistic guy is crazy and I spend most of the day trying to lessen the noise. I myself can't stand the sound of his running, he's light as a feather but still a damn stomper. I feel so bad for them., I feel better after venting, it was a really rough night for me, Completely misguided to think that it was karma for a woman who has had enough of the unreasonable, dying. Your new neighbors are being fake. Give it time. Then claim karma when they face the consequences of your issues. , What do you think should be done? Like if you were the neighbor? Not asking in a rude way but in a genuine way because if he’s at school majority of the time, what else can OP do? I understand things can be hard when people have such things going on but why not communicate that instead of being aggressive about it? I’m certain this is not the first time the noises he makes has bothered her. You know what I mean?, She said “I know your son is handicapped, I’m handicapped too!” I can’t confirm that, but she did have a red solo cup of booze in her hand and she was slurring her speech, We ended up buying a ring doorbell after that, This comment needs to be higher. This is unacceptable. I'm sure that noise can be an issue but that's kinda what happens in apartment living. At one point in time there was 1 apartment in my entire building that didn't have kids. Was it irritating sometimes? Sure but sneaking into someone's home? No. Not okay., Op should bear the burden of putting up sound deadening panels in his place if others are bothered by his son's noise. I also have a 20 year old autistic son but he is a jumper and a hummer. When we had to live in an apartment I would only rent the bottom floor to prevent disturbing neighbors. It's on the parents to figure this out not the neighbor., Or headphones? It’s not fair to ur kid if you have to try and make him be quiet 24/7. I understand her wanting it to be quiet during quiet hours tho. Depending on where you live state/city or the appartnent ur in the hours could be from like 7pm-9pm to 6am-8am, I was looking for this comment. Everyone else is more understanding versus like I said as well, this is clearly not the first time OPs child’s noises have bothered her. Why live in apartments if you expect complete and perfect quietness. I’m so grateful I’ve never had anyone try and be mean or rude to me and my children because of the way my daughter is. I wouldn’t even have the slightest patience for someone who can’t even try to communicate why my child is such a problem other than them making noise. We use to have a neighbor who was on drugs and she use to blast music all night and the police wouldn’t even come because she got called on so much. It’s crazy to think we should be understanding of an adult who can communicate issues they have more so than our own situations., Good lord this comment gets me. We were having similar troubles with our neighbors below us with the addition of blaming us for noise the apartment next to us was making. So many noise complaints about our son I felt so awful. I finally realized how much of a cunt she was when we brought his baby sister home and she banged on the ceiling every time I got up to breastfeed her at night. I'm sorry, but in what universe does a 5 day old sleep through the night without milk?!
I finally sent her an email and cc'd the HOA saying that familiar with children had protected status under FHA laws and that our bedroom was already fully padded and carpeted. Threatened to sue her if she didn't stop. I haven't heard a peep since., Totally understandable! It’s upsetting. I’ve been on both sides of this., No, she is a Karen. Being upset or frustrated with noise is not what makes her a Karen. Screaming obscenities at your neighbors does., I can imagine. I read through the comments. You've been through a lot and people expecting *your family* to move is insane., I'm sorry for you and you could be myself in 9 years. I am constantly worried that apartment neighbors hear him and myself when he beats walls and if he hurts me and I make noise. But lucky or not I have loud dog on one side, and I'm pretty sure if not selling pot actively smoking all the time on other side so I am okay for now. Just wanted to let you know you aren't alone and for me financially can't move., Some situations just don't have a solution. I don't know what could be done here beyond both parties trying to be understanding., This woman is a trash human being. You don’t owe her anything. IMHO you are past the “let’s talk this out like reasonable people” phase of things given HER behavior.
Please don’t stress yourselves out over this. I’m assuming you are in the US and if so, you can’t be removed from your apartment because your son has a disability and cannot help that he sometimes makes noise., It could also be helpful for op to help the neighbors select some rugs or sound absorbing curtains to reduce the noise level. I think that the op should be the one buying them as the continuous squels would not be a common sound to expect in an apartment., Yes deff have them put up noise foam block. And since it seems like she is the main one that is bothered by the noise it can help further muffle the sounds. That’s what I originally meant by offering to get her some, Usually the lease has something like quiet enjoyment which applies during the daytime. It means that you are supposed to avoid making unnecessary noise, but are supposed to be able to enjoy using your apartment to live your life. In the evening as it gets later the sound levels are supposed to gradually drop. Like after 7pm don’t use a drill for example, while after 10pm running a washing machine may be too much noise. For TVs there is often a reduce loud sounds mode that can reduce the amount of noise you make, though headphones could also be useful., Oh u could also invite her over and have her meet him. She might be a bit more understanding if she knows him., Exactly right. These people who live in apartments or take flights and expect perfect silence are the real problem. Fine to be annoyed by others, it’s part of life. It’s not fine to start screaming on a plane or flip on your neighbors for normal life stuff.
We shouldn’t have to apologize for our kids the way people expect us to. They are just as wonderful and just as entitled to do their thing as any other kid., To be fair, most people don't choose to live in apartments. I'm sure the OP's neighbor would buy a house if it was possible., Good for you! These kind of neighbors should be told off just this way. No reason our families should be harassed or made to feel like some kind of blight., I imagine you haven't lived under this woman's child. , She chooses to put her want for a cheap apartment ahead of her responsibility as a tenant and neighbor. She signed up for this life. Her neighbor did not. She had a rough night? Her neighbor had a rough night. Move. Not insane, but having an autistic neighbor can drive you there. , And again, in the nicest way but is OP just suppose to let someone run their family out of the apartments because they don’t like that their child makes noise? Are they suppose to let her act belligerent and do whatever she wants because she’s upset? Why expect a child, ND or not, to have more emotional intelligence and control than an adult? Is that neighbor entitled to special treatment even when creating a hostile living situation? Peeking through my child’s blinds would’ve been it for me honestly., I’m not judging the neighbors living situation. What I asked was who is entitled to make someone else compromise their living situation? You don’t like where you live, what do you try to do? We don’t know much about the neighbor besides the fact that she’s tried to be belligerent and violate privacy on at LEAST one occasion. What makes her situation so much worse than that of a child and family who is being bullied? If that lady needs psychological help, she should hopefully be in a position by now to get that help. The family here is taking care of their responsibilities. If people don’t like it, why not us start a petition where we can have autism friendly buildings and communities? Or is someone going to say we’re playing “favorites” because now we need one for Down syndrome and even for the damn neighbor herself! Every one has shitty hands dealt at some point in life. There’s nothing wrong with being a decent human. I mean really? If it “looked” like something was “actually wrong” would she still be the same way? Or if she had someone who got physical would she play victim? She sounds entitled to me personally until she can be accountable and leave a family going thru enough ALONE., Yup and so would OP, I’m sure. The issue is that expectations need to meet with reality. If you expect to live in a first floor apartment and enjoy perfect silence, this is a you problem.
Also this child is gone all day 5 days a week. And presumably sleeping something like 8 hours a night. I doubt he’s vocalizing loudly 100% of the remaining time he’s home.
She has a right to be annoyed, not a right to harass people., Being frustrated doesn’t justify hideous behavior. I imagine you haven’t been abused by your neighbors for something you cannot control. But maybe in your mind the woman who lives downstairs has a greater right to exist than OP and their disabled child?
|
Kid Escaped and Wandered the Neighborhood. Help!
|
Hi, first post here. I’m a dad to two nonverbal boys with autism ages 6 and 8.
A couple weeks ago my 8 year old jumped our backyard fence and ended up 3 blocks away walking shoeless in the middle of the street. Luckily, my neighbor had seen him and called me while another neighbor followed him. (I have the best neighbors on earth)
Anyway it really scared us, the kid can bypass all locks we’ve tried and you can imagine it’s taxing keeping tabs on two of them 24/7 so we generally had let him be in the yard without supervision.
I bought AirTags and a watch band for it but he took it off immediately. I’ve tried searching for unremovable products but nothing seems to fit the bill.
Any ideas are appreciated.
|
We put sensors on the doors and set up Alexa routines that announce on all Alexa devices that "Front Door is Open".
It tells you where to run., >the kid can bypass all locks we’ve tried
Have you tried dementia proof locks? I use Lockly brand ones. The thumbturns are removable and our daughter is to never see where they are or how to reattach them. The only way she's opening it is if someone didn't make sure a door is shut and locked. Even in that scenario she's given up on trying.
>I’ve tried searching for unremovable products but nothing seems to fit the bill.
Angelsense. It has multiple wearing options and relies on these two part pins that can only be separated using a special tool. It uses gps and its own cell connection so far more reliable than airtags that only tell you if they walk past an iphone., Your local police department (if you’re in the US) should be able to give you a free ankle bracelet monitor. I’ve seen a few kids wearing them since starting this journey and once ran into a whole team of cops out in the woods running practice trials with the program., I put deadbolts on my doors backwards, so you need a key from inside to get out. The one on my front door is all the way up by the top.
You can try this and keep the keys somewhere they don't know.
My boys escaped once when I first moved into my house, one ended up in a body of water and the other was two blocks away at the community basketball court. I've never had a scare like that in my life., AirTags in the shoes under the inserts are a good back up, Mine just did the same while we had neighbors "watching" him and our NT daughter. He was found by the police a mile away before they even called the cops. I am relieved but my heart was broken. I've had to put extra locks on the fences and am also looking for a type of band they cannot remove. I am thinking hospital type band.
O have heard of people putting air tags under shoe soles but my kiddo was also shoeless when he was found.
Try not to feel bad. He's ok. We also let our guy roam the back yard. I'm thinking about getting cameras too and be damned if I look at my phone a lot at work every time a squirrel runs by. My needs require it, Look into the Angelsense. It's spendy, but worth the cost. We used it for a few years before our oldest outgrew her eloping tendencies., We have ADT and the sensors on doors and windows chime when they are opened and tell you which area is opened up. My daughter has done that a few times while I'm in the bathroom and honestly it's been so helpful., AngelSense is a good option. There is also Project Lifesaver, which is free through the police department, but you can’t use it to track like you can with AngelSense., We have locks, alarms and cameras throughout the house. The alarms also don’t stop unless you physically go turn them off and are loud enough you can hear through out the whole house. I have them on all doors that lead outside as well as windows. I also saw some baby gates that have alarms recently and door stoppers with alarms., We have a door lock called “defender security U lock” off Amazon. I can link it if you need. If locks both our non-verbal 7 year old and our adult friends inside :). We also looked into a double-key deadbolt. Which both sides need a key to unlock, I went to ace hardware and got a childproof cover for the deadbolt, so far it's held up well. Then a few chain locks at the top also help. It's about delaying then long enough to intervene.
I'm sorry op, I hope everything gets better. My son is an eloper too and it's incredibly scary., You can buy air tag holders on Amazon that attach to clothing; we have them, and they work well., I understand. My son has been eloping randomly for years. We have a new neighbor (apartments) and he has run out door and tried to get in within 30 seconds so I can't catch him. It's bc they have 3 dogs and he wants one awfully and financially we can't swing it. It's scary though. Especially since my son opened neighbors car door and ABA therapist saw dude with tray of weed rolling up blunts. So now we are off ABA schedule until meeting next week. I have new lock to put up as high as I can but it sux. I don't know what's going to happen next week. Not as scary as your child running off tho. Only advice is same I live with-24/7 observation, if you need privacy wait til they are in bed. If I eat when he does he takes my food away and throws it away so i don't have it. So I have to eat quickly standing up or when he's asleep. It will get better. I tell myself that every day., So the AngelSense tracker can be magnetically locked onto a pocket onto shoes on to close that don't have a pocket. It's got real time tracking and one way and two-way calling at the push of a single button. You can also be the one to call them using your phone. The real time tracking even works indoors and it has runner mode and alarm settings. So if you're following nearby but can't peg down their exact position, you can set off an alarm from your phone that will alert attention and it's loud enough to also scare not good people away and can then oly be turned off by you.
It's an incredible concept! I've had one for a couple years but I started having issues with the SIM card. They sent me a replacement and I'm having issues with this one too. All the other users seem to swear by it. Most of their customer support are also individuals that have family on the spectrum or some kind of similar disability where wandering causes concern. I have always had horrible luck with technology. I just think there's something wrong with my own personal magnetic field as a human... Other than that I highly suggest it!
It meets all of the school requirements too so they can take it to school. It only has the capacity to listen in or talk in but it does not have recording capacity and that's part of how they are legally able to be used without disrupting privacy laws. Plus when there's special needs involved they have their own kind of protection laws in place anyway.
It's kind of an expensive device and the subscription fee is rather steep, but if you contact support they will send you links to find ways to help cover the cost. Like for where I'm at (Thurston county WA) DDA does not cover the monthly price of that, (although I think I just have a shitty representative and they might actually cover it my lady's just stingy government funds), but there are grants you can get to go towards stuff like that too.
And in some places police departments offer grants for trackers for disabled individuals as well. So I would definitely call around and see who's willing to help pay for what otherwise it's like 30 to $50 a month. They usually have pretty awesome deals to help you get the device cheaper than it originally is too
Godspeed my friend! You're doing great! Kids are slippery little buggers! Especially smart little bugs like the ones you bred!! Your neighbors deserve an award! (Or coffee or cookies 😁), Angelsense has wearable options with a magnetic locking clip. Of course, there is a monthly fee for service. We use Jiobit.
Confounding products are probably the way to go given your boys' ages - which are usually designed for cognitively impaired adults.
Interior keypad door handles or deadbolts might be an option. Windows can be trickier to secure (are either of them escaping out that way?).
A 6 foot fence is probably needed. That brings up the issue, though, of financing it. There may be a disabilities office, or you can contact your city - some cities will offer specialized loans to elderly or disabled residents for home improvements that will help them stay at home. In your case, possibly for a fence. The city puts a lien on your property so that when it's sold, they get in line first to collect what they paid out.
I don't have the name of the program - it was offered when my disabled dad (who was not yet 'elderly') needed a ramp to stay in his house., We used Door Guardian child locks. They screw into the door jam, and there’s a trick to opening them. Screw them as high on the door as you can reach and give it a try. They’re $22 on Amazon., We have been through this OP, you are not alone. We have used a few different types of locks and sensor devices. Im not sure if i can post the pictures here but if you are still needed ideas message me and i can try to send pics or explain. Examples are noise makers when the door is moved, various latches and the alarm that says when a door is opened., Exploring the neighbourhood makes for great childhood memories. The freedom he felt after escaping must have been exhilarating , I believe you can get tracking tags to hide inside sole of a shoe. That might be a solution for a while? Might be worth googling it, Again. Angel sense, We installed deadbolts that you need a key from the outside and inside to lock as well as a burglar alarm that alerts us whenever the doors and windows are opened., You could try electric locks. Yo I can key them to your thumbprint, use an app to get notifications of who goes in and out and give permission to other people with the app. Different Randy’s do different things, I recommend the Samsung ones, they have the most practical features for kids who escape.
You can also try things like door and window alarms, the ones that beep when the door or window is opened.
One of the connected security cameras is a good idea, it can identity people and alert you if they are seen in camera., We installed flip locks at the top of our door and installed an alarm system. We keep the alarm armed anytime our autistic kiddo isn’t in eyesight and he doesn’t know the code., Angel sense
https://a.co/d/4ok1JiB, have him wear a belt? airtag the belt?
Print missing signage ahead of time, so if anyone sees / notices hes by himself and doesnt speak your phone number can be found every other block in the neighborhood. put the letter in peoples mailbox too and sign it, stating thank you. You may/think about adding his name on the "safety" flyer you distribute, Try locks that they can't reach, maybe? I'm terrified of this and lock the deadbolts constantly. Songkad everything was OK in the end, What about sewing little pouches into his clothes you can put the air tag into, Too old. I remember that one too, Ok, this is genius. Thank you, Yup this was the key for us. Cheap door sensors hooked up to each exit. Sync to Google home for verbal alerts through speakers we have throughout house + alerts to phone. Even tells us if a door has been left open. The kid is smart af and knows how to get through any locking mechanism. This gives us a shot at keeping up with him., Thanks for explaining the unremovable aspect, I will def look into it, After seeing many many stories I would never trust any police officer with my child's location. Get an air tag or something., Oh lord, water is my biggest fear. I have had actual nightmares about it. So my biggest goal is to teach my little girl how to swim this summer., I have no words Thank God it worked out., Only if your kid keeps their shoes on 😂
I keep thinking of sewing a little pocket into his shorts., Thanks for sharing. It seems like most of these devices are made for clothing which makes then iffy for my sensory kid. My wife also wants to do cameras which I think I will probably do. Remote surveillance could be useful and at very least know which direction he left in. I honestly like the AirTag wrist watch idea but just need something permanent., Also, there are a few different types of locks that are installed at the very top you could look into as well., You can buy packs of the alarms off Amazon. They stick anywhere and are battery powered., We also have a fenced in yard and have cams installed with a view of almost all of the yard so maybe that? Also maybe get a privacy fence.. kiddos can’t jump that, Another vote for the defender door locks! We have them on all exterior doors. One of them is so tight I struggle to open it myself😂, Home Security Door Lock with 8... https://www.amazon.com/dp/B07DR9CMGZ?ref=ppx_pop_mob_ap_share, Announcing which door opened is a huge help., Yeah it still gives me anxiety even though it's been years., If it’s of interest to you, my local YMCA has adaptive swim lessons for disabled children, might be worth looking into if adaptive lessons are available in your area!, We also have these locks and they’ve been effective for us., Hi, I’m Vetted AI Bot! I researched the **EverPlus Home Security Door Lock 8 Screws** and I thought you might find the following analysis helpful.
**Users liked:**
* Lock provides security (backed by 9 comments)
* Easy to install and use (backed by 10 comments)
* Lock can jam if used frequently (backed by 1 comment)
**Users disliked:**
* Lock sticks and malfunctions (backed by 7 comments)
* Cheap, low quality materials and construction (backed by 3 comments)
* Does not fit standard doors (backed by 5 comments)
This message was generated by a (very smart) bot. If you found it helpful, let us know with an upvote and a “good bot!” reply and please feel free to provide feedback on how it can be improved., Definitely. Lightning speed, awesome parent. Thanks, Good idea, I think they're finally at a point where this *might* be possible. Previously any idea of swim lessons or lessons of any kind... Well, they weren't ready. They might be now though.
Thanks for the tip.
|
Kid broke my heart after family visit
|
My 8 year old is super receptive. We just visited my wife’s family and he got a cold shoulder from his maternal grandmother,who kept asking is why we do not discipline our barely verbal kid more.
This morning the boy went to my bed sat down and just said:”not broken “ while pointing at himself.
I just hugged the little guy.
|
Nope, that would be the very last visit. I can only imagine what kind of person would make a child feel that way. He is absolutely not broken, and shame on her for making him feel that way., So heartbreaking to have to protect your child from your family. Poor kid...I would avoid putting my child in that position again. Ugh., This pisses me off to no end! What's worse is your child is aware enough to know when they are not accepted. It's easy for us on the Internet to just say, "Cut them out of your life.". It's another to actually do it and live the process.
Whatever happens you did the right thing in responding and loving your child.
I hope it all works out for your family. And if you and your wife decide to cut out certain family members because of this, just know that you have a community here that not only supports you, but some of us have done the very same thing and lived to tell about it., brings tears to my eyes OP.
No child deserves a grandparent to not appreciate them for who they are. Sure, they may not understand at first (my folks and inlaws didn't with our child) but they soon learned to love them for who they are.
Your son deserves the same, This has actually made me realise how I often look and think of my son as ‘broken’. Must do better., Absolutely not. I am so sorry to your son. People are horrid and I think what autism shows us is peoples true colors. We cut out family as soon as their opinions on autism started and we are all better off for it., I’d say”that’s right buddy, you are not broken but other peoples hearts are and we will always be happier together and I’ll love you forever bc you are perfect the way you are”, A lot of people are saying to cut them out, which I don't disagree with. But this person did damage, and they need to make it right. Talk to them, explain what they did wrong, and let them know that they need to apologize, and to do so properly. Give them a chance to tell your child:
1) I was wrong.
2) I am sorry
3) You are a good person.
4) You are not the one who is broken, I am.
5) I will not make you feel this way again.
6) I am sorry. (Again)
7) How can I make it up to you?
Chances are they will not want to do this, but it at least gives them a chance to learn and grow, even at an elderly age, and to model proper behavior., It might be time to exclude those people from your life. Try to understand why your son is saying he’s not broken. Did your son overhear something specific? Maybe you missed something?, One less family to send a Christmas card to., Fuck. That.
He’s not broken, but him saying that would sure break me., I'm fucking crying for your poor boy.
Toxic is toxic.
Family doesn't mean blood.
Your sons health andwell-beingg are more important than anyone's opinions or anything. Tell them they can accept him and love him for who he is. Or they can never see any of you again, when it's that painfully obvious to him, I'd imagine there is a lot more than this little bit that you don't see, and imagine how she talks ABOUT him when your not around and not to you. I can't even imagine a family member doing this. They would immediately not be Family anymore, especially If my son said something like that afterwards because of it.
School and the world are hard enough for our kids. Family should be their safe place above and beyond all else., This makes me sad. I'm sorry they had to go through that, but glad that they've got a parent like you to let them know they're right and definitely not broken, My mom favors my oldest child, who has much lower support needs and masks well. She cannot figure out how to interact with my youngest daughter who is a level 2/3. A lot of it has to do with my moms undiagnosed autism though. I know she gets very overstimulated by my youngest outbursts and my mom doesn’t understand why I don’t discipline her for it. Like she did to me. Like her mom did to her. To make us mask better.
I’m not saying forgive your mother in law, I just mean to say humans are complex. She doesn’t deserve to be around your son until she can learn to be kind. He was clearly effected by her behavior, This broke my heart today. I’m so sorry. No more visits with that family member until they can show him love., Our children are receptive and understand. What they hear about them will become their belief system.
Just because we all don’t understand the world in the same way, doesn’t make us any less susceptible to becoming traumatized.
Please tell your son daily affirmations and let him know every day how wonderful he is. Let that positive voice become his automatic thought., Our kiddos see, hear and feel (empathic) everything. The most important thing is that you and your wife understand. Sometimes family members will say something from their normative brain thinking that it naturally still applies to our kids. Feel free to correct in front of the child so that they learn it is not ok, and that you are there to help advocate for them. It does not have to be rude, just direct. You state what was not ok, and then you follow with, “I the future….we would appreciate xyz, and follow with the consequence of not or a positive reinforcement. Offer them to join you for the social groups or offer to link the to local resources to help them get educated. Ignorance is not always intentional and can be fixed. I would definitely put some hard boundaries or space on and intentionally toxic person., That would be my last visit. But I definitely would insist on having a straightforward talk with the in-law. If not from you, then for sure from their “blood” or your spouse.
That’s a very solid boundary that in-law has no business crossing., Please tell me that he wouldn't be forced to make nice with those people anymore..., The amount of rage I felt when reading that.
I’m sorry your little guy had to go through that. It’s heartbreaking., My kids never got to know their grandparents on both sides of the family bc they don’t miss a relationship that isn’t there. We recently hired a babysitter who treats my son lovingly and validates his needs and wants. She’s also a grandma so win-win! No
Your poor kiddo. What he said broke my heart. Are there reasons why he needs to visit your MIL? Any other children he can play with? Otherwise, his grandma is a toxic b and there’s no point in bringing him to her house. IMHO What do you think?, I’ve been no contact with my mother for a decade now for ignoring my then 3 year old autistic son one too many times. I’m so sorry your child had to experience that with his maternal grandmother. I hope you’re able to either limit visits, set boundaries, or something to limit contact with her. Autistic people may not always have the words, but they are super intuitive., My level 3 ASD, 4-year-old son is nigh non-verbal and has been diagnosed with gestalt language processing. My wife's mother has been very opinionated about how we raise our son and refuses to try to understand his condition.
One day my wife and I were talking about her mother. I snapped and said, "I don't want to hear a damn word about what she has to say when it comes to our son. If we followed her *advice*, he would've died 3 times over by now."
Since the birth of my son, our relationship has been... I'll be cordial and say strained., Your kid obviously needs new grandparents. Where can we submit resumes for selection?, This interaction makes me sad but you may be able to turn it around. My parents initially did not know how to interact with my ASD son and my mother in particular used to give me the advice to be more strict with my son, thinking that, if I set the expectation to look people in the eye and respond when spoken to, and play with the cousins, that he would eventually conform. I had to educate her about his ASD and, since then, things have blossomed into a wonderful relationship. He was around 4 or 5 when this happened, old enough for my mother to have had higher expectations for him, but not so old that there was a pattern of negativity that could not be overcome. I wouldn’t have that conversation in front of your son, I’d pull the mother to the side. If she wants a relationship with her grandchild and realizes the challenges he faces maybe she will do an about face. Good luck., I really hope that’s the last visit! He’s not broken at all and I hope he feels all the love you give, That's a hard one, I'm having similar issues with my own mother who isn't around enough to see the schedules and structure we do have in place. Though, as my son gets older he has also become more aggressive or quicker to meltdown, we're desprately trying to get ahead of it right now., I rarely allow my own father around my son because of the things he says. He will just talk about him like he isn’t even standing there. I have repeatedly told him to stop and repeatedly told him non-verbal isn’t non-listening.
We do still see him, but I limit it to once a year. I told him it’s because his attitude and the way he talks is damaging to my children. It was an epic fight between he and I.
I say all of that so you will know I fully understand how hard it is to cut people out. Because, she needs to not be around your kid., You should tell your MIL exactly what your boy said. She probably thinks he doesn’t know what she’s saying about him. If you let her know that he does and it really hurt his feelings then she might feel really bad. Give her a chance to make it right like a PP said. I wouldn’t jump right to cutting her out of your life just yet., This breaks my heart. Keep in mind all people, especially family, will give you unsolicited advice.. I'm sure she meant well, but someone (maybe your wife if it was her mom) should let her know his mind works differently and she did really hurt his feelings. Her response, maybe not initially- give it a little time to sink in, will help you determine how much you want to allow her to interact with you son moving forward. I would have no problem letting my family know protecting my child is my first priority so if interactions with them hurt my child, they just won't interact with them. It will be their loss. I'd also preface the conversation with something along the lines of how much it hurts you to even bring this up with them. I'm so sorry. Even with all of the advice from my family, they're incredibly supportive of all of my kids, but especially my son on the spectrum. It really is her loss if she isn't a part of that support system for your child., Your little guy is not broken. You (or better your wife) needs to educate her mom on him, if they don’t understand, it’s their loss., "Why don't you discipline your kid more?"
"Why don't you eat my ass, how 'bout that?", I cut my family off because they made my son feel less than, blamed lack of discipline etc and I refuse to let anyone make my kid feel like that.
I've made it clear that unless they can be supportive of him then I don't want them around, Let me start by saying what your mother in law did was horrible and you should have a very straightforward talk with her. In the future you might want to have your wife visit her alone or stay at a hotel — I always found that to be the easiest when visiting relatives.
It can be very difficult for grandparents to understand and support an autistic grandchild. They don’t have a good understanding of autism and its characteristics. People getting older, possibly early Alzheimers can make people easily agitated and more likely to say mean things. It is likely they have never seen or dealt with an autistic child/person in their whole life. My child is 20 now and we’ve gone to due process three times. I’ve explain what happens numerous times, but my dad thinks it must be a misunderstanding and the school’s would never do anything like that.
This last part might be a little harder to accept, but take a look at your home program. I’ve have good friends that have an autistic child and had their kids in behavioral programs, but we’ll go visit them and their child runs wild at home. One kids was constantly spitting on the floor. An other would lick all the pizza slices and then would put them back in the pizza box. Each time their parents never addressed it. When asked why they did it they explained they didn’t want to enforce any rules at home or the kid just needed a break., I'm going to ask, how does a grandmother asking the parents why they are not disciplining their child, relate to the next day the child saying they're not broken?
Unless the grandmother ranted this phrasing, are you not sure that you're making 2+2=5? Possibly fueled by your dislike of the maternal family whilst holding yours on a pedestal? Which is easy to do when you only see rarely and can keep the rose tinted glasses on..., Seems like Grandma needs to get busy dying., Oh baby. People are unintentionally so cruel. 💔, I'm so sorry! It's heartening that he said *not* broken, at least., 😩😢😭 nooo. This breaks my heart. Give him so many hugs and reassurance that he is not broken, he is perfect the way he is. My daughter has had moments like this and I still cry when I think about it. I'm so sorry you are having to deal with this. It's ignorance at its finest, I'm so sorry this is the extended family you guys have to deal with. Support and acceptance is so important to children (NT and ND) and parents., Ignorance Ignorance Ignorance... is so sad your son had to go thru this... it's hard enough trying to educate people in general (neighbors, school staff, other kids) ...one would think family ...specially grandparents should at the very least make an attempt to inform themselves before spewing BS out of their mouth...
I am terribly sorry bud.. just hug the little guy every day and tell him how special he is...maybe this being AUTISM AWARENESS MONTH the wife could buy her mom a book on autism so she can learn how difficult things are for your son before destroying his self esteem like she just did.... stay strong you and your family please 🙏, My heart breaks for your kiddo and you. I'm so sorry. Currenly am having to deal with my son's grandmother on his dad's side having major denial. The way she speaks is like she thinks in old world ways and wants to use the R word and that she will no longer accept him as the amazing individual he is. It's not fair but, they have us, and that's the biggest gift we can give them and ourselves., This makes me so furious that I can’t articulate. Sweet baby, they are the broken ones., Reading this literally broke my heart in two. I am so sorry your son had this experience, but so happy you were there for him., I get those comments about my non-verbal four year old daughter too & it pisses me TF off! But I'm learning to ignore the ignorance 🫂, My son is 10 and pretty high functioning. However he has meltdowns and struggles a lot when he's overstimulated. My dad's first reaction is always... in my day, kids would get whooped for that behavior. Like yeah, how did that work out for you? It's so frustrating., Dang, I’m so sorry this made me tear up. Sending hugs, As a grandfather to a wonderful autistic little boy, I'm so sorry he was treated that way. That was horrible of his grandmother., I’ve cut people out , some family , and I’ve done it effortlessly after giving them a chance of course ., Poor baby that made me cry, I hope he never feels that way again.., Sometimes it's about autism. Sometimes is about being 8 years old. <3, I can not agree with this enough. It doesn’t matter who, don’t let people who make your kid feel this way around him., Not my family. My side of the family is very Latin and super accepting of the child. He is a rock star when we visit them. The problem for s the distance., I agree, it's infuriating that someone would say something so hurtful to a child. It's important to remember that children are very perceptive and they can pick up on even the smallest cues. If your child is made to feel unwanted or unloved, it can have a lasting impact on their self-esteem., "This is my family. I found it, all on my own. It's little, and broken, but still good. Yeah, still good."
- Stitch from the Lilo and Stitch movie.
I feel like too often we strive to have perfection in our lives, houses, friends, food etc. But humans are mostly odd things broken simply by living and heal in odd ways. We're all broken and imperfect in my house, with autism, heart and liver issues, depression, PCOS, trauma history, etc., and I love us all. As I say to my husband; : you're not the perfect husband but you're the perfect husband for me." My kids aren't the perfect kids but they're perfect for me. And I hope for everyone that their weirdo wife/ mum is a good fit for them as well., I'm in the same boat, but my biggest pet peeve is unsolicited advice. OPs story is very similar to one I had with one of my brothers. He tried telling me that spanking works great as a "last resort".
I don't need to hit a kid that can barely communicate.
However, that doesn't change the fact that I can't control my thoughts from time to time. I don't hit my kids but I lose my temper far too often. I just can't stand people chiming in when they have no clue. In fact, it's one of the few benefits of being in situations like ours. My compassion and temper has reached new levels and I'm grateful for it, I really like this response. So important to model the behavior we'd like to see in the world at/for every age. I have hope that we can all keep growing toward our best selves., I know I teared up too. Our babies are not broken. They’re beautiful and they just think differently., Are you the inlaws?, As a child who was rejected by part of my extended family, what you’re saying makes absolutely no sense. A child can tell when someone doesn’t like them or want them around. Just because the parent hears one thing, doesn’t mean the child didn’t hear much worse and internalize it., My wife is from the Middle East. Her family is so much more accepting of my son the way he is. Think this whole idea that we have so much control over how our kids turn out is a very white American idea., Beautifully said., Couldn’t have said it better 👏👍❤️, Why for suggesting that jumping to conclusions, may just be that?
Autistic children need discipline as well. And a grandparent discussing disciplining isn't that unusual, for any grandchild nor inflammatory, per se., Quite possibly. But also not necessarily.
Why would a grandparent act that way with no preceding context?, Because sometimes people just suck., Yes they do. But we do not have to automatically assume this of people, do we?
Sadly, at 8, this child has probably heard all sorts of things from all sorts of people and situations. That doesn't mean that the child saying this yesterday is a result of the grandparent, unless, as I said, this is what the grandparent said.
We need to protect our children. But that doesn't mean assume that everyone is against them. And this outlook which seems common on some of these threads, is really unhealthy.
Likewise, having a child with ASD, doesn't mean that they don't need boundaries, discipline etc. So again, from the op, it sounds like a typical conversation that grandparents have, for children whom are NT and ND., Understanding that there are people who are awful isn’t assuming that everyone is against our kids. Way to make catastrophic assumptions yourself. Just because I believe the parents here isn’t saying the world is against them. Nothing about this conversation is typical. The fact you seem to think it is, is alarming.
|
Kid had mother of all meltdowns at Target Store
|
I am writing this as I watch my 8 year old non verbal child finally calm down after entering the store.
You know what made it worse?
The judgment of other parents.
More than once I had to say
“ He is Austistic” because of the super hostile looks.
More than once I have been scared that a “concerned” parent is going to get me shot in the US.
When I say that is not a freaking excuse, it is a reason.
|
I worked at Walmart and we had a regular customer with autism. They were in a wheel chair and made... odd sounds? I don't even remember, but they were... eh, disruptive, i guess, til ya got used to it. But the caregivers, grandma and aunt, were so nice and fun to talk to.
Had a customer come through and heard the noises the wheel chair kid made from across the store - couldn't see the kid at all. Started bitching. I smiled and said, oh ma'am, that's one of our regulars, they're actually autistic so... this crabby old hag said, "That's not autism. I have a kid with autism and I can control them, so they shouldhandle theirs!" I was silent after that.
People are fucking stupid., Just remember random stranger’s judgements carry no actual weight. You’re under no obligation to explain yourself or even respond. Their opinions are not your problem.
Maybe they make an unkind comment but so what? You’ve got bigger issues to worry about than that. I guess they could call the police or CPS but what are they going to say? Someone’s kid(who they don’t even know) threw a tantrum in the store? Yeah I don’t think anyone’s even going to show up for that.
I mean I do get it, on top of being difficult when your kid does something in public that draws attention like that it’s embarrassing and it sucks but just remember that’s all it is- just a small embarrassing moment. Don’t let it get you down., I know you are venting and we have gone thru that, don't worry about people judging, you can't change the world, take deep breaths and know you are there for your child and family.
But for all parents who land on this threadMy son has been better over the years, we made it one of our goals during his ABA.
But for some who are going thru this it can be a long process so hang in there and as a parent I understand that for some of our special kids it will never work out.
1)!start with smaller stores like cvs or a local deli
2) goal 1 is to just get to the door not even inside the store
3) goal 2 was to go inside the door and stay for literally 10 seconds
4) goal 3 was to walk just one aisle and come out
5) goal 4 was going to target, we thought it was more welcoming and just walk a few aisles
6) goal 5 was actually pretending to shop, wait at spots look at stuff etc
7) goal 6 was asking my kid to stop at a spot while I check something 10 ft away, so he doesn't run away
8) while at target we did grocery since my kid likes cereal our initial purchased were only food and 5-6 cereal boxes.
9) we then expanded to other stores and then effing Halloween showed up and Christmas decorations and we regressed a bit cause my son was getting scared , so we did not go to stores forever....but then eventually repeating most of steps after new years and he does fine most days.
Now he is scared of balloons and if he spots we have to navigate him a bit since lot of stores in US have balloons by entry/exit doors, but other than those he is fine in stores., The best way I’ve found to cope with the judgmental looks is to literally avoid even looking away from my child. Pretend like nobody else is there. I can feel the stares but I just ignore them because honestly none of their opinions mean shit to me. The only one I care about is my son, how he’s feeling, and what I can do to help him. I’ve found that by not looking at other people it helps me cope. If I can’t see the disapproving judgmental looks, I can’t be bothered by them. If anyone says anything under their breaths I just completely ignore. If someone says something out loud I completely ignore. Mostly to stop myself from getting worked up and snapping back at the people, because that would upset my son even more. You owe nobody an explanation if your child has not caused direct harm to anyone. Being loud isn’t a crime.
And honestly these judgmental people fuel me even more. Like if my son is stimming happily and people start staring in annoyance, I just stim with him and stare back like yeah I’m unbothered by you and have his back so try me. Lol, Sometimes I want to get one of those fucking sunflower lanyards. They're a thing in the uk. Or maybe a beacon or a light up sign. I've sat for 20 mins by the loo rolls while my son works through it, just rocking him not looking at anyone. To be fair, some people have been really kind in that situation.
I used to be a support worker for an autistic teen and she would get excited and shriek in Walmart (we call it Asda)
I remember one woman really ostentatiously doing the sign of the cross because my client shrieked in Asda and made her jump. The girl I worked for was very obviously disabled - wheelchair, dribble bibs etc.
Like calm down you'll be fine? You can surely read the situation here, no need to get God involved?
Sorry you've had a shit time. Hope you are all ok now., No judgement here - my kiddo melted down in Costco. I got right down on the floor (I wear skorts for a dang good reason) to do a control hold on the very out of control munchkin. I remember the stares, the polite tight smiles. No one offered to help - but they kept their comments to themselves as far as I know. I hear your pain. Best of luck in finding supportive stander-by folks instead of rude idiots., My 6 year old has meltdowns in any target no matter what. Ever since he was like 3 lol. I think it’s too overstimulating for him so I don’t take him there anymore.
He used to be the same way with Walmart and had a screaming at the top of his lungs meltdown when I was doing self checkout one time. Everyone was staring 😭 random strangers were trying to offer him things to stop. We really needed groceries so I just tried to be fast as possible.
He screams LOUD. I’m 99% sure my hearing loss is from him screaming multiple times a day for 30 mins or more for the past 6 years. I have to wear hearing aids now.
So yea i try to not taking him to big places like that but he’s cool with Walmart if I’m willing to buy him whatever he wants 😩, Large retail stores can be triggering for ND people. Fluorescent and bright lighting. Odd smells. Huge empty spaces. Lots of strangers. Tons of abrasive sounds. Everything designed to get your attention. Can be very overstimulating., I feel you! I actually went to Target today and received a few nasty looks from judgey parents too. My son wasn’t having a tantrum but yelling that he wanted things, pulled on clothes, said he wanted to leave, etc. I tried to stay calm and engaged with him only but, sometimes those looks just get to me! You aren’t alone. Some people just suck., People staring at kids and their parents having problems are THE WORST.
You can either make a situation better or worse. Why do they choose worse??, We were just at an event where a child with more severe autism than my son took off running and disrupting the event and getting in the way. His poor mom was running like crazy trying to catch him. We all were taking turns riding this slide thing and she had purchased a few turns for him but the line was long.
I let her cut in front so they could go through their turns and move on without incident and she thanked me and explained he was autistic.
The person behind me after she left said “I can’t believe she just announces his diagnosis to the world like that, how embarrassing”
I usually fume about this stuff for an hour and then think of a response but this time I was just tired of it, maybe anticipating some bullshit. So I responded “Well some people can be assholes about autistic children’s behavior so she’s just trying to explain a situation that is already embarrassing for her. I’m glad we are able to make it a little easier on her by letting them go ahead” crickets., Just mean mug them back. Like something that says “look at this judgmental b**** being a stupid c***and I’m judging her so hard, she’s a horrible evil person”. Or just tell em they’re an asshole. If they don’t respect other people, they’re not entitled to respect from other people. Simple as that. No need to give a f_ what they think. They’re assholes. Nobody should care what assholes think., I just saw that Twitter post reposted on the sub White People Twitter and had flashbacks to every time I had to carry my daughters like surfboards out of Target or Wal-Mart or wherever. The older one isn't even autistic, just ADHD and anxiety and very willful. The younger one just upped that a notch. They are 12 and 8 now but damn, so many dysregulated meltdowns over the years. So someone carrying is now going to shoot first and ask questions later when some poor parent with their nerves already destroyed from a shopping trip has to haul their kid out because they are overwhelmed and now having a meltdown because they didn't get every item in the checkout?, We have a kid who is also a flight risk, so we had a going out shirt made. We don’t use it all of the time, mostly when there is a higher risk of separation.
It has the kids name and our phone number as well as stating that they are autistic and how they may act when scared, etc.
It really helps during those situations. However we’ve also got some judgment just for the shirt. People just love to judge!, I'm sorry that you got those looks, people really need to be better than that., Aww fuck em.
My kids have had fits, meltdowns, stims, and sensory moments.
Either I don’t get much judgment or I didn’t notice if we did! There’s been a few comments about their behavior and honestly I didn’t even share that they have autism. I just smile and nod.
Really it has no effect on us. My kids will be autistic and I will handle them as I see fit. Look and words mean as much to me as they do my non verbal kids..
Goodday stranger 🎩, I remember during the height of the pandemic feeling like the best thing to come from it all was the lack of societal pressure and interaction. Beforehand, I can't count how many times people would say horrible things about my daughter during her meltdowns... one lady cut us off in line and referred to my daughter as "retarded," and another time an elderly lady tried touching her hair to reassure her about her "bad mommy." And funny enough, a third time my daughter eloped in a Target! They handled it like champs, ended up opening a register for us after everything calmed down, and the cashier had an adult autistic son and knew exactly how to help us out of the store quickly without directly engaging my daughter.
All that to say, it just shows that people who can't understand simply won't sometimes. And you know what? They don't have to come home with you, your kiddo does, and how you help them and advocate on their behalf is number one. I'm so sorry you went through all that stress today... solidarity for sure. ❤❤ I hope you can find a way to unwind and treat yourself to some peace for the day now that it's over. You're doing a great job!!!, We’ve all been there. Focus on your child, not everyone else.
I don’t know if this helps but my daughter has always had a big problem with grocery stores. She *must* ride in the cart. Problem is she’s 5’ tall and 130lbs.
I tried having her help me push the cart instead. We made it all the way to the checkout line and she melted. Wanted to sit on top of the food. I stopped her from getting in and she went off. Throwing items across the store. Tried to take off her shirt. Laid on the ground and screamed. I put the items on the belt and paid while this was happening (and maintained her dignity as best I could). I can’t imagine what looks we were getting but we got through it.
My only advice I can give is get your kid out in the community. The more people know you and your child, the more support you’ll get in these public situations. Also, the more comfortable your child will become in them. My kid is now 10, still mostly non-verbal and we’ve just started having successful grocery store trips. It can happen. Good luck!, My daughter used to have crazy meltdowns in Target long before we even knew she had autism. I would get on the floor with her and do whatever I could to help her. Sometimes everyone else was zoned out and sometimes people were present to me and either didn’t understand or tried to help but were making things worse or were assuming I just didn’t know how to handle my child.
Just know that there are people out here in this world that get you. That’s such a difficult and exhausting experience to have.
Lol I just remembered one time when I couldn’t get her to calm and I had to leave the store with her kicking and screaming under my arm walking by the checkouts. I yelled “free birth control, People.”
Lol I totally forgot about that. Thanks for the memory., I bought some really cool autism t-shirts on Amazon for my 20 year old non-verbal son. They have the ribbon logo and/or say things like "Live, love, accept, be kind, along with the word autism". It helps when my son starts making odd sounds or repetitive behaviors. People are going to stare at him, so they usually see and read his shirt.
When we went to Universal Studios. We had him wear a cool shirt with the word Autism upside down and in big letters that said "seeing the world differently". I noticed people would see his shirt and stop staring. One man told my son that he liked his shirt. It helped a little., People who stare are the absolute worst. It’s so fucking rude. I don’t care. When I see someone when any type of disability or condition, I would never stare. Tell me why most of the people who do stare at 40 and over??? Like how are you not educated enough to know 1. Everyone is different 2. Staring is fucking rude. This always happens when my son is making noises in a restaurant or store and there’s always an old person staring. It’s so hateful., >More than once I have been scared that a “concerned” parent is going to get me shot in the US.
Shot? No. CPS called., Same. Today in the barbershop getting my LO a haircut. Stay strong ❤️❤️, So sorry. I had a similar experience recently. Ignorant people suck., What did you do to resolve this issue? Why the child is having a melt down? What do you do for your child? Was it 2 or 3 mins or 30 mins. What exactly happened 🤔 those stares are the worst!
Do you know the trigger? Did you bring toys or something for them? Just looking for insight., I am so sorry about the stares my son is 20 months hasnt been given official diagnosis but has really bad sensory issues and developmentally delayed. He will have meltdowns out of nowhere will cover his ears and scream and clap repeatedly. I learned if I say no it gets worse he will scream no no no cover his ears so i learned if i say its ok silently and pat his pack and chest he will calm down i also learned his pop it keeps him at bay and is prone to less melt down at stores that way. Just know your not in this alone i get the judgy stares i dont even explain i smile and go on with my day., “I can control them” is literally Karen for “I beat my child when they don’t listen”, This. People are so ignorant.
I was in Walmart not too long ago and there was this lady who had a son around my sons age (8) who was nonverbal making the same exact same babbling sounds. I recognized that he was starting to have a meltdown. I’m not the one to stare because I know how it is in public with your special needs child, but I noticed this other woman just starting at this lady and her child. I also noticed as she was giving her a nasty stare she was mumbling under her breath as this lady was apologizing due to her son having autism. I just simply walked up to this lady and let her know she isn’t alone because I have a child at home who is the exact same way and I have been in her situation more than once. I also told her not to let the ignorant people that aren’t educated make her feel bad either because her son has as much of a right to be in public as anyone else does. I said it loud enough for that rude ass woman to hear me too. I stayed in that area until the child was okay. A little kindness goes a very long way and that woman was very grateful for what I said/did.
I can NOT stand when I’m somewhere and people are ignorant towards someone who clearly has a disability. I hate a bully. And I HATE when people think they can tell someone something like “my kid has autism too” blah blah… okay yeah but if you educated yourself on it you would know that autism is a spectrum with different levels of severity. 🤦🏻♀️
Sorry for the rant. I just hate it & I try my best to advocate and educate in any way I can., Yea, just ignorance and arrogance combined. No one could possibly be more adversely affected by autism than their child and given how they have “handled” their child’s autism, they could fix it all.
Glad you at least tried to spread a bit of awareness., >this crabby old hag said, "That's not autism. I have a kid with autism and I can control them, so they shouldhandle theirs!" I was silent after that.
When people say that they're either lying or, like it's already been pointed out, have a particularly toxic style of parenting (read: abusive in some way or another)., Excellent advice.
We did a lot of shopping at the grocery store during off hours when it wasn't too crowded. I used to make it a reward for good behavior at home so he would be excited to go.
We also went to the indoor shopping mall during quieter hours as a reward and just walked around. He would explore different stores, go on the elevator and escalators way too much, and go to the little play area in the food court then get a kids meal if he was good through all that.
Once we got used to it I would let go of his hand and let him walk ahead a little. At first he would walk about ten feet in front of me, turn around, and come running back. Over time the distance that he and I each felt comfortable with got further and further.
That's what worked for us. I have other friends of kids on the spectrum who never had an issue with it at all, or whose kids can't take the noise and chaos of big stores and shopping areas. Every kid is different. But I like your approach, Sorry but I LOLed at “no need to get god involved” 🤣, Lmao "What does god have to do with this unless that's why you're so unhinged and judgemental?", Insufferable assholes is why, Omg! Good for you having her back and also for making them flail alone in their own asshattery. There is something weirdly satisfying to me about someone who thinks I’ll commiserate with them to talk smack about another person’s challenge and then when it doesn’t happen like they expect… (chefs kiss)., This is such good advice about community and honestly what I worry about a little my little grows because I am 5’ tall and 130 lbs and he’s 4 and 45 lbs and definitely on track to be taller and almost outweigh me by the time he is 10 and when puberty starts I have no idea what things will look like. He elopes and has a few meltdowns every so often. He is sensory seeking so grocery and Target are doable but he can still get overstimulated, so 20 min is about the limit at this time., Those people assume that kids now are just all little terrors that misbehave and their snowflake parents haven’t taught them anything…and I think they feel entitled to stare at what they view to be an awful example.
I wish they could swap places with some of y’all sometimes., People especially old people if they grew up in the 50’s and beyond were likely not even around disabled people much if at all and didn’t have the exposure younger people have. This is because many disabled people were not out and about in public when they were growing up and were often completely separated or led a shut in life. There was no ADA or accommodations like there are now or even baseline understanding of what autism was by average citizens. This is what I tell myself when really old people stare. It helps a little. If it’s super blatant I might ask if there is something I can help them with as they look lost., Shot isn’t a crazy concern. There is a new propaganda/conspiracy movie out getting a certain demographic of people worked up into a froth thinking everyone is a pedo. People are making social media posts saying that they’re armed and hunting “child traffickers” and you can supposedly tell because the kids are screaming for help in public. There’s some real whack jobs out there., That part!!! Her statement 1000% translated. A damn shame., I laughed but it's sad, "YOU NEEEEED to get your child under control!!" says the bitch who can't control her mouth and ability to mind her own business. Damn right she thinks hitting children is how you must discipline. I'm gonna start reminding them to hit themselves for having the audacity to harp on strangers., Can confirm 🤐😅😅😅, I just gave a dad mad props the other day. His two kids were helping him check out and it started great, but you know how self check out goes. I'm an adult and can screw up with 3 items or less. His patience was lowering- I mean obviously it's the end of a shopping trip with 2 little boys! So the clerk got the boys stickers to distract them and I just yelled "you're doing great dad!!" As i walked past👍 if more of that happened, life would be better for everyone, I had a lady stop me as we were walking out of a restaurant once. It was right after the news came out and said the Sandy Hook shooter was Autistic, just for context to what happened next. Apparently, she heard me and a lady that was in the both next to me talk about my sons Autism. That lady had heard me explain to the waiter that my son is Autistic and he is very specific with food and was asking them to just make plain spaghetti and bring him melted butter on the side. This way he can add as much or little as he wants. I always found it helpful to alert the waiter/waitress just so they could help make sure his order was right. He would have a meltdown if we had to send back his food, so I was always trying to avoid that by making sure our server was also aware to check his food before bringing it out. Anyway, we had a pleasant conversation and she even complimented Bryce as she left saying “your such a good boy for your mommy”. So, we had our Dinner and Bryce was wonderful the whole meal, not even one meltdown. But, as we were leaving, this older lady sitting at a table a little down from us grabbed my arm and told me “if that boys Autistic, you should lock him up and keep him away from normal humans”. I was shocked and pissed. I told her “look bitch, my son is a better person than you will EVER be. Plus, normal is a dyer setting”, yanked my arm from her and stormed out. I should have yelled assault and had the restaurant call the police, but I was too mad to think about that., Or have a fully verbal level 1 child at home with no developmental delays, and they think that's all autism ever is., Good luck to you and your son. My daughter already outweighs my wife, and she isn’t able to physically handle her. Generally she only goes places when I come with, unfortunately., That is very true. Thank you for that perspective. I have never considered that., We have an older family member that’s in her 90’s and losing her filter. One day she told me, “back in my day, they used to just call people like that mentally retarded and send them away somewhere, but now they just let ‘em loose! I don’t know if that’s better or worse… I don’t think those places treated them very nice… you know even Kennedy had a retarded sister that they kept a secret…”
I mean aside from the outdated language, she’s not really *wrong,* but I had no idea how to respond other than “oh yeah, I’ve heard how badly disabled people were treated back then…”, Oh I don't think the fear of getting shot is crazy at all. This is America.
But your odds of a "concerned parent," getting you yet another CPS visit claiming you're abusive is much higher. Especially if you're a male. There are women who think every man is a wife and child beater. Just give them a reason to accuse you, like a screaming autistic child.
As a man who was physically abused their whole childhood, and has only ever been the victim in DV, trust me it's so fun getting accused by CPS of beating everyone for the 12th time., It’s like “can I hit you and control YOU because it seems YOU need a timeout, Karen”
Poor kid though. I’m happy we’ve become generally much more kind to children over the past 50 years and not just beat kids because they got beat., Yes!! A little kindness goes a long way. I wish more people understood that!, Omg! That is NOT okay. I would have absolutely lost my shit. I have went off on people in restaurants before because of the ignorance.
I’ve also noticed that this is becoming a thing. People claiming that people with autism/Asperger’s are monsters because someone else committed a crime. But on the other hand I’ve also noticed where people thinks it’s a new fad to be autistic. It’s so hard being a parent to an autistic child. I would have told that lady “normal humans” do not grab each other and proceed to verbally assault disabled people. The nerve of some people smh 😡, Wow...I’m speechless. That woman was really nasty., That's a good point!!! But ya know, even then it's so maddening. Even parents of level 1 children often get the whole, "But your kid doesn't *look* autistic" kinda spiel from people.
Of course, there are gonna be instances where they generally don't tell anyone else, but it's wild nonetheless., https://www.nps.gov/articles/000/rosemary-kennedy-the-eldest-kennedy-daughter.htm
She likely was on the spectrum.., I stay wanting to slam adults. Children are a breath of fresh air to me. ETA I used to be so annoyed by children and did not like them. At all. Some childhood trauma carry over. The children are where it's at though., Oh, I wish I had let her have it more, but I think was so stunned. That’s the first time that kind of thing ever happened to me. Sure, I got stares and looks from people, but no one had ever confronted me like that before. I’ve heard some nasty comments from people who didn’t know I could hear them, but never actually confrontation. Sadly, it wasn’t the last., It was quite shocking., My husband is autistic (well, technically he was diagnosed with HF aspergers as a child but that's no longer a diagnosis), and be gets the whole "you don't look autistic" thing alot. He just laughs it off, it doesn't bother him but it drives me nuts 🤣 the man didn't talk until he was 3 and will info dump about baking bread to you for hours, what do you mean he doesn't look autistic lolll, 🤣 Such a mood, honestly. Please send him my way some time, I wanna be a master at banana bread lmao
|
Kid hit my 4 month old baby
|
Hi, Im so happy i found this subreddit and I really hope you guys can give me your insight.
I’m a 3 kids mom, 11years, 6 years and 4 months old Mom.
If I’ve learnt something through my motherhood journey it’s never judge another parent for how the handle a situation that I’ve never had to deal with.
For example when I was a first time mom, I used to think that the mother of the kid that bit my daughter was an AH, until my second born daughter was a bitter herself… I don’t know if I’m making myself clear, lesson learnt and I’m a better person because of it.
Long story short, yesterday we were at the country club and I was having lunch with a friend and my 4 month old baby was sleeping in his stroller right next to me.
All of the sudden and out of nowhere a kid of maybe 9-11 years old came running through my baby and hits him I pushed the kid and scream.
His mother came running graved him and went back to their table like nothing happened, I stared at her and nothing no apology, nothing.
I started to shake and cry and left because I was in shock.
As soon as I told my husband what happened he went to the restaurant and asked for the women’s name, there someone explained that the boy was autistic which was obvious to me and it was the main reason why I didn’t scream at the women in the first place.
After I told my daughter the story she asked me if the little boys name was T, I told her I didn’t know and then we decided to look her up and I fact the boys name is T, my daughter told me that almost a week ago the boy spit on her fries and the mother just came and graved him, no apology, no new fries, nothing.
I just don’t know how exhausted and depleted this mom must be but at the same time my husband keeps telling me that we need to write a letter explaining the situation, not because of the kid, but because of the parents.
I’m not doing anything until you guys give me guidance.
Thank you in advanced
|
Just because my kid is autistic doesn't give him an excuse to be an asshole. It's possible the kid is nonverbal and doesn't understand his actions, and in the case the parents should be apologizing and containing their child. He shouldn't be allowed to abuse other guests in the restaurant just because he has a disability., Bad behavior needs to be addressed and corrected, autistic or not. Sometimes, it just takes longer to correct with autism. My son is level 3 nonverbal. We had to accept there's a lot we just can't do anymore. The situation you described is a privileged one, meaning they don't have a "right" to be there. I know, very touchy, unpopular opinion. we rarely eat out because of our son's behaviors, and when we do, it has to be under very specific circumstances. That being said, yeah autism can beat you down ( literally and mentally ), make you bitter and resentful, but it also restricts your life. Sounds like that lady hasn't understood the last part. Your kid, no matter the diagnosis, has no right to run around spitting on other people's food, etc., Some perspective: with some autistic kids that are violent if you say “no” or offer any kind of negative reaction in the moment it actually reinforces the behaviour in them (they will hit more). So the procedure in this case is to ignore and divert. And this is not some weird parenting technique, it’s what formal BCBAs and experienced autism therapists do in some specific cases of chronic aggression.
Having said that, the mom would be expected to apologize profusely and keep their kid in check. If the kid is unable to be in public without aggression, the mom has as obligation to keep the kid close by to keep everyone safe.
The fact she is at her table ignoring the kid and laughing is not OK. She should be on top of things keeping everyone safe., If you’re ever around these people watch that kid and if he comes near your baby defend him.
-signed a parent of a severely autistic child who was 5 and body slammed on his back hitting his head by his 9 year old autistic cousin. If he comes near my son again like that he’s catching these hands. His mom walked him back and put him on his iPad and said don’t do that. Like are you fucking kidding me. I was and still furious bc my child is not unusually violent and He was randomly slammed on the pavement. I will defend my son next time to prevent an attack., Wow that mom is so shameless. I don’t know but I stopped going to restaurants for that reason, my kid is not violent towards others or to babies but he has no social awareness and can grab others foods or if he gets excited he runs with no direction accidentally hitting people. I can’t explain it to every single person so I just avoid going to these kind of gatherings. If for some reason it happens elsewhere first I profusely apologize and then explain he’s disabled. It cost nothing to apologize. The mom is setting her kid for failure because he’ll be taller and stronger and by then an apology won’t be enough, My kid is level 3, nonverbal, intellectual disability. We are talking like super autistic here in case you don't know those terms. He still would not be allowed to run around a public space and certainly not allowed to hit a baby. The fact that she didn't even apologize blows my mind. I apologize when my son tries to randomly hug people or take their drinks. I can't imagine not apologizing if he hit a baby. I would take it up with the club, honestly. Being autistic isn't an excuse for being allowed to run around and act like an asshole 🤷♀️, Dealing with the other child aside for a second - have you taken the baby to the doctor to be evaluated yet?? Because if anything at all, God forbid, has happened to your baby you would have every reason to confront the parents in some form, whether that’s talking to management at the country club, the people who run the sports events, the parents themselves…. Or at worst, and I hope not, the proper authorities.
I wouldn’t come at it aggressively or angrily and start accusing (I know that may be really hard) but with concern for both your children, yours and theirs. Like, “This could have been a very dangerous situation for both our children and I want to know what steps I can take to protect both of us going forward. I am scared of something happening to either of our children and don’t want to see anyone at all getting hurt.”, I have a special hatred of these posts usually, but the tone here seems sincerely concerned.It's kind of you to think of her perspective, and I know that she can't be everywhere to intervene and the child may not be able to apologise - however once she is aware, you and your child should have got an apology, no matter how brief.
I attend a SEN play group with my daughter and there are children there whose impulse control issues cause them to hit, spit or push other children. And it's an environment of where we are all understanding of that and support each other in redirection, etc. But even in this setting, the parent intervenes where able and apologises when not.
Can I ask if the mother saw her son strike your kid? Just in case by her perception she just saw you pushing him after he approached? And has she seen the spitting. It's best to make sure everyone understands what happened before taking further action., No, this isn't how it works. Just because a kid has ASD doesn't mean he's allowed to assault other people (hitting and spitting in food). That mother needs to figure out ways to get her kid under control or keep him out of that environment until he can act appropriately. This is coming from someone with a son with ASD - I would NEVER allow him to behave that way in public, it's on me to parent him or keep him at home, Yeah I wouldn’t have been chill if someone hit my four month old. My son is non verbal autistic, big and strong for his age and no matter how frazzled I am I alway apologise if he steps out of line. They’re both lucky you didn’t yeet them across the room as a reflex., One time at the park, our kid had gone to play and another older kid came up and grabbed some fries from us.
We didn't mind, we could figure he was probably autistic, but we were concerned about allergies (and we're always concerned about the last time any kid washed their hands). So we immediately and politely told the kid that he needed to ask his parent/grownup first. Once his grownup saw what was going on, they were immediately apologetic and made sure that he didn't come by again.
At the very least I'd expect the parent to give a quick apology for the behavior you and your daughter have experienced., It's one thing if there's one incident, the family is apologetic, and makes strides to stop it in the future.
But it sounds like this child has carte blanche to spit on peoples' food and assault babies.
She needs a sitter to be on top of him at all times while she's there, she needs someone to watch him at home while she goes, or she needs to have him on a leash so he can't elope from the table.
I would raise the issue to management, explaining the instances that have happened and recommending some steps for the family. Ideally, it would be great if they could stay, but they need to take steps to keep others there safe. , His bad behaviour shouldn’t be excused because he’s autistic. Him hitting a 4 month old baby isn’t excusable, It sounds to me like the mom is handling the situation very well.
I've done the same. The kid is doing it for attention. You screamed at the kid, so he got his stim, and so the kid will do it again. Scolding doesn't work. You *have* to ignore it. It comes from pavlonian training, called extinction. The child gets no reaction, so he stops doing it.
Let me assure you, the mother IS sorry. But she's handling the best she can, and she might be following her ABA therapists instructions the best she can.
This exact situation has happened to me. I ended up leaving McDonalds because of it. But I followed my son's instructions, and over time, my son stopped hitting other kids. Now he simply asks "Can you play with me?", which is far better. That's what he's been saying all along, but didn't know how to say it.
Oddly enough, I'm going to write a post about this. My kid hits my wife for fun. I've repetitively told her he is doing it for attention, enjoys being yelled at, and does it harder for a bigger reaction. He no longer hits me, but does it to mommy for fun, because she doesn't follow ABA therapists instructions., "Graved"?, Unfortunately, there are lazy parents in every group.
My sister is lazy. She is 5'3", weighs over 270 lbs, comes home from her office job and melts into her couch; where she sits all evening and then lays down. She just has my nephew exist around her home. There are zero rules, routines, schedules, or cleanliness routines for my nephew to learn from. Any time we talk to her she gets defensive.
Here's the real kicker:
She's happily married and her son has ASD level 2.
I'm a single mom of two sons; one has ASD level 3 and Global Developmental Delay. I *know* how tired she is. I know how draining autism can be....You still have to do it., My son bit my daughter when she was pretty young. He was in a biting phase. However he ALWAYS was told it was wrong and ALWAYS had to "apologize" to her. When He bit a stranger I apologized and even cried in the corner.
We always apologize. and by we I mean me and him. Always, Clearly we can't allow \~9 year olds - ASD or no - to hit a 4 month old, whether or not that kid is going through his own bad experience at the time too. Screaming at him is probably not going to really achieve much, but I think there is some leeway here, given that you presumably don't have your own ASD kid to practice with.
I am, however, a little concerned by you pushing the child. Not sure whether to read it as you strongly blocking him out of the way, or a full shove to the ground. There may be space to disagree on this, but I'm of the mindset that seeing a child hit your child doesn't give you moral license to respond in kind. If it's more of the former, then you're good to go. As an adult, you can forcibly move a child for both his and your child's safety. But if you basically assaulted a \~9 year old - even if it was out of shock - then you probably have a lot room to grow as a parent / person yourself too, and an apology to the parent is not out of the question.
Not to villainize you, because you understandably went through a strong emotional reaction. Perhaps the other kid was going through a similar trauma due to his disability because of what was occurring at the club (e.g., noises, lights, people, etc.), and his panic was just as real as yours, even if you think that's dumb. But at the end of the day, there's not that much daylight between 30- or 40-something year old striking a 9 year old and a 9-year old striking a 4 month old. We can quibble about justifications, but that's just degrees of still being wrong.
That being said, you guys are owed an apology too., I’m sorry but some of your English grammar is confusing me. Did you write that you pushed someone else’s child? Did you say that someone from the country club informed you of a child’s medical condition without consent from a parent?, Do you have an autistic child? Just asking because I see these are your first posts in the community. I only read your initial post. If you don’t have an autistic child are you asking us because you suspect the child is autistic and we might have insight into his behavior?
I don’t know why my kid does half the things he does. He’s 4 years old and I’m still learning him. He doesn’t have any aggressive behaviors. Sorry that this experience happened. I personally wouldn’t write a letter. Maybe you can write it for yourself if it would be therapeutic to you. This is going to sound horrible but no one is required to apologize to you. Process what happened and move on., Wow, I am so sorry you and your babies experienced that. I don’t have any advice since my son is still really little I’ve never been through that, but that’s not okay. The mother is fully responsible, it is scary because if he does that to the wrong person something terrible can happen to him. She needs to lookout for not only his sake but everyone else’s. Not only that but it’s a huge pet peeve of mine when parents don’t apologize for their kids wrongdoings., Autism can be hereditary. It could be that the mom is on the spectrum herself and too exhausted and overwhelmed and zoned out to deal with the extra intricacies of the social p’s and q’s with this situation. I know I would be. That’s a high-difficulty social situation to deal with. Think about it, she’s probably exhausted. Sick of it. Mortified. And any other range of emotions. And having to hash out what to say to the person on top of that, what words would be sufficient, with the gravity of the situation. I mean I would still make some effort. And so should she. But it depends on where she is on the spectrum (if she is). I’d assume SOMETHING like that is going on if she consistently just offers NO apology. Id rather assume that than to just assume she’s an AH. To not offer any type of communications at all after something so jarring as that deviates enough from normal expected social behavior that I’m ok assuming something like that. That’s just me though., We don't go out to avoid situations like this. I cannot physically control my child.
9 year olds should not be hitting 4 month olds. You also should not have pushed the disabled 9 year old and screamed at him, even if you were in a state of shock. This sub is full of parents that would condone that and say they would do it too, but that doesn't make it, or them, right. Internet vs reality. Anyone who thinks this way needs to grow as a parent and person. Tit is not for tat when it comes to a situation like that, especially when one party is a 'rational adult' and the other is not.
By all means, make a report. Make a plan in case it happens again. For example, if the kid comes near your baby, block him or pick up the baby. Yell, 'help!' and 'where are your parents?" There are so many things you could do instead of physically pushing or screaming and crying. This reads like the actual altercation was mild, and the mom DID come running but you're miffed the mom didn't apologize., [deleted], As the father of an 5yo who is on the spectrum, I think that in social environments it’s important to mind her actions. If she was to ever do such i think corrective action should be taken, and an apology would be issued, as well as anything within reasonable circumstances to rectify the situation. I think that she is part of the problem that creates a negative stigma against Kids with ASD, I couldn't have said it better. Even if her son can't control himself, SHE can control the VAST majority of the circumstances he winds up in, and she can also apologize on his behalf. She did neither, and that coupled with the lack of correction to him is just setting him up for failure and trouble in the future., Thank you so much for answering me I just can’t seem to understand how she didn’t came straight to me to ask me if the baby was doing ok, her son is a big kid and he hit his head.
I’m still shocked by the punch the baby received and I obviously understand the boy… my anger is with the mother, I feel this comment. I am always aware that we are not the only ones out at a restaurant and refuse to interrupt others' peace when it can be avoided. This applies to my autistic son and my NT kids. We don't eat out as much as we used to (not a bad thing), but living in a small town has been an amazing help. One local bar/restuarant opens their entire banquet area up for my family whenever we show up so my son can run around a bit. At another restaurant in the area the owner is always checking on us if we go in and playing with our son a bit. I understand being overwhelmed at times, but the mother in the situation above also needs to have enough self-awareness not to repeatedly put her or her child in those situations repeatedly. If my son did anything like those examples I would be apologizing and paying for their meal., Thank you so much for this!!! I think this is what I needed to read!! Like I said somewhere before, I live in a tiny country and the place where this happened is where i go almost everyday so we are going to see each other again and I just need to be the bigger person in regards of how to handle this situation in case it happens again!! Thank u!!, Right? My kid went through a cheek squeezing phase just after she turned 2. We put her in a toddler class and you better believe I stepped in/redirected her any time I saw her extending her tiny mitts towards another child’s face.
So glad we outgrew that tactile habit., Agreed, as an AuDHD adult - my mom would've immediately removed me from the situation, not rewarded me (no dessert, no fun activiy, etc.) and profusely apologized to the victim(s) (and maybe even paid for their meal). (She was also physically abusive and would've whooped me seven ways to Sunday when we got home, but that's not a good solution for an NT kid, let alone an ND kid whose challenges and support needs are to the point that they do not understand the implications of their actions. Don't do this.)
This mom was out of line and is setting her son up for failure - her son won't always have care people (whether that's her, his father, another relative, or a professional caregiver) to redirect or correct him. If he can't be in public safely then she needs to seek out support for him to live a full life without putting himself or others at risk., This right here! My child is one of those kids (PDA). Saying no or reacting negatively gives her a compulsive need to do it. I know this and take precautions. Like avoiding public and safety bracelets to keep her with me. The mother should have picked the child up and removed them from the restaurant. Depending on the level on impending aggression the apology may only be a quick sorry. Then when in a safe space where the child can be aggressive and destructive explain that hitting babies is not ok and why.
Discovered planned ignoring last week and WOW! It makes absolutely no sense logically because you would think ignoring it would make them do it more but nope. Destructive and aggressive episodes are shorter now., Hi, thank you so much for answering, first of all I want to tell you that the reason why i know about this subreddit is because I’ve been having my doubts about one of my kids and I live in a Latin American country so you basically have to do the job yourself, I know a lot about autism because i basically read a lot but i didn’t wanted to make this post about something else.
She saw everything, she was almost grabbing the kid but he was faster, she was almost next to me when the hit happened (it was quite a punch on the babies head).
Regarding my push English is not my first language and I don’t really know how to explain it but the kid didn’t hit and leave, he was in top of my baby on the stroller and I can’t pin point what he was doing or trying to do but at the moment I 100% was just thinking about my baby i wasn’t even aware of the age of the kid or about anything I didn’t push him to the floor just off the baby…
I just don’t know how to proceed because it’s a small country club, in a small country and it’s not like we are not going to see each other again…
The entire situation sucked… for her and for me but she just seemed not to care, she went back to have dessert and laughs with her table, This is kind of the reason why I made this post, because sometimes i kind of feel like we judge because of what know and with autism specifically because it’s a spectrum is really hard for people to understand how to react specifically if you don’t know case. In my daughters school they have classmates who are autistic and they know how to work and help each individual classmate.
I guess at the end my conclusion is not knowing how to handle the situation in the future considering that we will have to see each other frequently and I need to protect my baby and at the same time respect their boundaries while I make sure he never touches my baby again, "Grabbed"
OPs first language is not English., Not disagreeing with the you, but just adding a grain of salt. Not all children are able to do that though (apologize) for a number of very real disability-related reasons. Some can’t even understand it’s wrong. In that case the parent has to do the apologizing., I'm a petit person, and there honestly might not be a calm and controlled way for me to protect myself or my child from a 9 year old if they are using full force to try to attack me or my kid.
OP did not know the full context of the situation. This was a very unexpected experience -- I don't think they overreacted.
For context: You should look up the experience of folks who are attacked by something or someone that is not in control of their actions. A very small mammal (like a raccoon or squirrel) can literally *kill you* as an adult human if it's in a rabies rampage. I've been personally attacked by a stranger having a schizophrenic episode. If 9 y/o was having a similar episode (again -- OP had no context so could not know), then 9 y/o could have *literally killed* her child., Yes to everything, i promise you that after one second I thought and talked about this with my husband because I would never in a million years thought that this would’ve been my reaction in a situation like this, it absolutely sucked to by in this position and to be 100% honest I just didn’t have time to process.
My scream was a “what are you doing? And help” as soon as the kid was off my baby it took me o e second to realize that something was off and I couldn’t even look to were they where so don’t worry cause I’m sure I didn’t make the mom or the kid feel bad.
But the hit was quite strong and the lady didn’t even asked if the baby was ok, > But if you basically assaulted a \~9 year old - even if it was out of shock - then you probably have a lot room to grow as a parent / person yourself too, and an apology to the parent is not out of the question.
This is the one part that put me off as well. Is OP owed an apology? Absolutely. I keep thinking of how I'd handle that with a Level 3 kiddo. I've apologized and tried to explain but I have a hard time with shoving another kid., Hi! Yes my English is not great, sorry, I don’t know how to explain the push and scream because it wasn’t either push or scream, it wasn’t pushing like a lunatic pushing a kid it was more like a push him out of the stroller, he was on top of the baby and the scream was like “what are you doing? Help” even tho I didn’t understood the situation luckily I don’t feel like my reaction was aggressive because it could easily go totally wrong and I understand that I was pretty lucky, also you never know how you are going to react, and yes the people from the restaurant told me about his condition when we went and asked for the women’s name., What are you on?
A 9 year old hit a premature baby and you don't think OP deserves an apology?, Hi, I’m familiar with the subreddit because I live in a Latin American country and I’ve had to do my own research regarding autism because I deal with my own personal challenges with one of my kids and I’ve had to be their advocate regarding certain things, thanks to this subreddit and the certain topics that I’ve researched here I understood that the kid was autistic the minute he was back on his chair and away from my baby.
Having said this, we go to this club almost every day because this is the place where my eldest play sports, chances of seeing each other again are a 100% chances, I don’t want to anything that could potentially affect this kid but at the same time this kid is a big boy and if a baby triggers something that I may not understand or not be prepared to handle it’s a really uncomfortable position, my baby is a small baby and a punch like the one he took could be tragic… this can’t happen again.
And at the exact same time it’s really heavy on me to carry the responsibility of maybe taking some action that could potentially affect them…
I try to investigate if i could possible approach his mom and have a chat but I’m also kind of nervous???
I really don’t want to offend someone here, like I’ve said before I have a baby and you never know if some day you have to walk on this woman shoes… but I can’t seem to shake what happened yesterday… I’m still in a bit of a shock I’m sorry if my English sucks, >If you don’t have an autistic child are you asking us because you suspect the child is autistic and we might have insight into his behavior?
She explains right in the post., Yes!!!I didn’t scream at him I don’t speak English very well I did yell help, and what are you doing, and the pushing you are right… when I thought about it after I was calmer I realized that it could’ve turned out real bad, I honestly didn’t even saw if he was a kid, adult, I didn’t have time to process and also in probably no doing any complain, is just that I was baffled by the adult reaction in which here I am thinking about her kid and not hurting him and she didn’t give a … for my baby…
But luckily I read your responses and I’ve learnt a lot… parenting is hard in any form… and being a part of this generation of well informed and empathetic parents sometimes feels huge, And yes, my baby is premature so he has a corrected age, meaning he’s not really 4 months per se… and he took a big punch, I still can’t believe this happened and the mom did took the kid and went back to eat ice cream at her table without even looking at me… by this moment I had no clue her boy was special needs and i did cry because it’s very difficult for me to confront in general, While I would never maliciously grab or hit a child- I wouldn’t hesitate at all to physical remove them from my child if they were harming them in some way. I don’t think OP aggressively pushed the kid, I think they removed them from their child’s space as they were harming their child., No, it’s most likely because we were at a country club in a very small country.
We go here everyday and we will see each other again, this is a big kid and I feel like I don’t know anything about this kid and I also don’t think I have the tools to handle this situation and I for sure won’t allow this to happen again.
I’m asking expert parents for guidance on how should I handle this situation because writing a letter would probably affect them but I don’t know how to prevent this from happening again., Yeah, I didn't even touch on that because it's so obviously wrong. My oldest has autism but his 2 younger sisters are NT. We have to have very strict rules at home for safety reasons. The only thing I can muster in the mom's defense is that she had to have been mortified and embarrassed beyond belief. Still doesn't excuse her or her child's behavior in the slightest., The only scenario where I wouldn't go over is if I was the only adult with my son and I couldn't have him at my side when I apologized. Ie. If I couldn't ensure he wasn't going to hurt someone else while I stepped away.
We obviously don't know anything about this kid or his mom, but she really needs to either find a way to have him behave in the restaurant or not bring him.
The unfortunate reality is that sometimes parents need to realize their child's limits. I am fortunate my son isn't violent, but we don't go out to eat a ton. Restaurants can be noisy, food can take a while to make and he honestly doesn't eat most restaurant foods. So we only go out to eat at off hours and at places where we can bring some food items for our son., She’s probably embarrassed and exhausted and probably really tired of apologizing for her kid’s behavior and just - couldn’t.
Or maybe she’s just a bad parent.
The parent should be responsible. But, to do that, they also need to be willing to make the situation significantly worse IN THAT MOMENT, which will probably end with them walking out the door. Because that’s when the response needs to happen. Right then. And that can be exhausting and embarrassing, which is, I think, why people don’t always do it when they should.
On the flip side..
I’ve got a non-verbal kid with autism. When she was younger, it was so hard to go anywhere in public. Her behavior wasn’t always bad, but it was always “weird”, and often loud. Going to Target, or the grocery store … everyone stares, old ladies make nasty comments, random people tell you to keep your kid quiet and to learn how to be a parent.. and so you chastise your kid appropriately loudly to try to placate the public, but not too much so that your kid feels destroyed. On our best days, we do the best we can, have polite responses and smiles in our interactions, and apologize all around.
On the not-so-good days, a lot of that falls apart. Sometimes people really want you to yell at your kid, but if you do, in that moment when they are already amped-up, it will likely make the situation much worse., Thanks so much for taking time and guiding me I think my English didn’t help and I made myself look like a child aggressor and I think even tho it was a shoo king situation I luckily handled it in way were I didn’t harm the boy either physically or emotionally.
I do still feel nervous about having zero tools on how handle the situation in the future, I have to go to the club in 2 hours cause my daughters have classes there, I’m an introvert and it’s not easy for me to have to address this situation, I just don’t want the baby to be hit again.
Thank you so much, Thanks for your response, and just to re-iterate what I meant by hating these posts is due to the amount of - "here, explain this and do emotional labour for me" posts that this sub gets. I understood that was not your post once I had read it.
Then in this case, if the mother is aware that your child had been hurt and if she is aware that other people's foods are getting spat in then she has a duty to be intervening - not only for other children's benefits but her own. Your child and other children shouldn't be at risk due to someone else's parenting., Well, it's a confusing situation for sure. Obviously you need to protect your kiddo, but at the same time you can also try to help that other kid and mom in need. Some of the best interactions I've had with people is when they knew I was having a hard time and they took initiative to help. I've had a psychic abruptly come up to me and talk to my kid gently, which was enough to get him out of a transition meltdown. I've had a mom who worked with autists offer to my kid to pet their puppy. When you look at it as a community effort, as of this is not another mom, but tour sister that you want to help, you might find a great relationship., My son also can't technically apologize. He is nonverbal. However he does understand the act of apologizing and definitely feels shame when he has to, which is the ultimate learning tool.
For his sister it's a high five or a hug for apology (whatever he's comfortable with). For strangers I explain the situation away from him and then ask if they're comfortable receiving a high five for an apology, Obviously context matters, and if you think you couldn't step between your child and that child without getting seriously injured, then fine, I'm in no position to argue that you shouldn't use more force than the event probably warrants when it comes to protecting a baby.
But neither am I going to grant you that striking a child is okay because you hypothetically couldn't stay calm, and maybe didn't know what else to do. There's no info here on whether OP thought the kid was going to harm her, or couldn't be made to stop by other means. I imagine she probably thinks there were other options.
People are so quick to try to see black and white in these situations. Let's all just try our best to recognize that we can make mistakes, and that's okay. Apologizing when you hit a kid - potentially unnecessarily - does not mean you're admitting to being evil, or you're letting that kid off the hook. It's just taking personal responsibility for a bad decision, and striving to do better next time. That's 99% of what being a parent to an ASD kid ends up being.
But look, if you want to explore different theoretical, extreme situations in order to justify hitting an ASD child, then fine, I'm not going to spend a lot of time trying to debate you on that. We each have our own journey. But I'm going to disagree in this instance, at least, that it was the correct behavior., Special needs or not, I think you pushing him off is reasonable. It was probably more instinct to protect your baby than an aggressive or punishing push. My kid is level 3 and can be aggressive sometimes and I would expect this reaction from the victim or their family if my child did this. Your duty is to protect your baby first whether it’s “nice” or not., I think this is a reasonable response. You were chasing the kid trying to get retribution. You were trying to protect your baby.
Is your baby okay? Did they get checked out by a doctor?, do not feel bad for your reaction! I would have lost my mind! You are a mother, and what you did was instinctual, and it was to protect your child! I am so sorry that you had to deal with that. Something absolutely needs to be done. Whether a child is autistic or not especially at his age and I’m assuming size that is very dangerous and completely unacceptable!, Don’t go back to that country club. They clearly tell any and everybody business., No one is offended. Certainly not me. I just gave my opinion. At the end of the day all you can do is process the situation and move on. As much as it hurts no one is required to apologize to you or show shame for what their child did. No matter what route you choose you will have to process the situation and move on., I was asking to confirm because it was surprising to me. I wouldn’t encounter one child with down syndrome and then ask a subreddit for parents of children with down syndrome for insight. They just have the same syndrome. Their personalities, behaviors and abilities are unique., I understand. My kids gonna be as tall as me soon but he's still developmentally closer to 2 years old. People assume autistic kids know more or are smarter than they let on but that is a dangerous lie. Some just don't understand and can't be held accountable. When it was my kid doing things like that and grabbing people's stuff, I would fall over apologizing and explaining he's disabled. I apologize to you on that mom's behalf. When your kids don't understand basic things, life is really hard. I wish more people had empathy for asd kids like you've shown, I would just pick up my baby and stand up. Or block them. There are literally so many other options other than pushing, screaming, crying. I would also have initiated a dialog with the other family., This is a very familiar place, it’s very open and the community is very special, if a situation like this would’ve happened with one of my oldest kids I probably wouldn’t be feeling as defeated as in feeling, but it was quite scary because my baby was a premie and I didn’t get out of the house until very recently, I’ve been also dealing with my own fears and issues regarding his health and I was so sad, he took a big punch and even now is hard for me to be rational, i just want to let it go and the next minute I’m extremely angry at this woman, > Her behavior wasn’t always bad, but it was always “weird”, and often loud. Going to Target, or the grocery store … everyone stares, old ladies make nasty comments, random people tell you to keep your kid quiet and to learn how to be a parent..
This was compounded for us 10x over in the Pandemic. I'll never forget how it felt to get screamed at by a door attendant at Sprouts because my kid couldn't mask. I happily masked and tried to go grocery shopping either first thing in the morning or just before closing. We were always fast and followed the 6 foot rule. It's never enough for some people. Especially when your kid 'looks' autistic., Honey, your English is better than mine. I'm college educated and English is my primary language. Your English is still better than mine., For some kids that struggle with social comprehension or other co-occurring conditions, the medical advice given by therapists (including BCBAs) in some cases is to actually distract and ignore the behaviour. For things like pathological demand avoidance, which is a rarer profile that may happen with autism, saying “no”, internalized shame or asking for an apology actually works as a reinforcer of the negative behavior, due to extreme anxiety related neurological reasons.
When this is the case, of course the parent has to be aware and apologize on behalf of the kid or know their triggers and keep them at bay so everyone can be safe., Elsewhere in this post I have said similar, it's the one type of post that really irritates me on this board (although I think OP is sincere here) because it's asking us all to be their Google about this annoyance they've encountered and validate their experience. I understand opinion by committee but surely at some point you need *empathy* for the committee you choose, and just make your own mind up., And that's fine. My story was for MY child. Not this one., I know, and I said upfront I wasn’t disagreeing with you. But I’m not answering this for your sake, but for others who come here to read. It’s important to add a grain of salt when it’s needed.
|
Kid iron deficiency medicine
|
Confirmed via blood test my kid has an iron deficiency. Not a surprise like many ASD kids his diet is very weak.
So they prescribed some concentrated iron liquid medicine... and it smells vapory alcohol with a hint of corn and lemon. Its disgusting. It has 5% alcohol in it on the label.
How is my kid who already has an iron deficiency due to restrictive diet... how is the fix to magically get him to take this new and gross smelling liquid? Wtf?
Very frustrated
EDIT: the extra tricky thing is basically the only way to get him to take medicines is via a milk bottle... but too much milk apparently CAUSES an iron deficiency... he has a very limited diet, milk comforts him
|
Flintstones complete iron gummies or iron gummies?, My son was severely anemic this time last year and ended up needing transfusions. He was obsessed with cows milk. I switched him to almond breeze extra creamy, it has the closest taste/ texture to cows milk. His hematologist recommended novaferrum tasty instead of that horrible tasting prescription. It’s on Amazon and comes in different flavors. Iron is also more easily absorbed when paired with vitamin c so another supplement or orange juice, etc. my sons numbers are great now and getting him off cows milk increased his diet for more foods. He is still very picky but any new food is an accomplishment!, This is what i use for my son. I put it into an actual pill crusher and mix it in with 8 ounces of soy milk. I agree these iron pills taste gross but pulverized and mixed in my son doesnt seem to mind.
https://preview.redd.it/03f3bvy4ctnc1.jpeg?width=1170&format=pjpg&auto=webp&s=24cb4c53ec7b9963a7ccef9e5237ed5f9590ed7f, My autistic kid had confirmed borderline low iron levels. (It was checked due to sleep trouble- kid wouldnt sleep longer than 3 hours at a time) The doctor gave us a script for a liquid iron supplement, and even I could not blame my kid for not wanting to take that after I tasted a single drop of it.
I did some searching online for a better tasting alternative, then checked with the doctor and got the approval to give him NovaFerrum Tasty! Liquid Iron Supplement. She explained that while this OTC one wouldn't provide the same amount of iron as the script version, it does provide quite a bit so should be fine and to contact if symptoms don't start to improve within a few weeks.
Thankfully, my kid took the NovaFerrum stuff because it actually tastes like chocolate (they also make a raspberry flavored). While I don't know for sure, his sleep did show improvement and actually entered close to a "normal" routine over the past year since we started the iron supplement., Ugh I know the stuff, I hide it in smoothies. Then I read that it shouldn't be taken with food unless taking it without food leads to nausea.
I also recently got an iron fish, been using it in every dish I can, hoping it makes a difference., Will your kid eat seeds? Pumpkin seeds have a ton of iron and can work if your kid likes crunchy textures., My kids like the chocolate flavor of novaferrum on Amazon. https://a.co/d/4U2kKUs, Does he like gummies?, Lifeable Iron Gummies with Vitamin C - 20 mg - Great Tasting Natural Flavor Gummy Supplement - Gluten Free Vegetarian GMO-Free Chewable - for Iron Deficiency - for Adults, Men, Women - 90 Gummies https://a.co/d/djZvmmY
Iron must be taken with vitamin c or your body doesn't absorb it. My kid takes 6 of these a day to deal with iron and ferritin deficiency and it's slowly but surely climbing up. Very very picky eater and gobbles these right up, We use renzos. They're small chewable tablets and can be found on Amazon., Some compounding pharmacies have services for making medications more child-friendly!, Iron gummies are what we use, alongside a daily vitamin. We infuse *everything* we can get away with full of dark leafy greens, high iron foods.
Milk and iron do not blend well, either: it can cause pain and other digestive issues, even vomiting (we learned this the hard way). [source](https://medlineplus.gov/ency/article/007478.htm#:~:text=Iron%20is%20best%20absorbed%20on,same%20time%20as%20iron%20supplements)
“Iron is best absorbed on an empty stomach. Yet, iron supplements can cause stomach cramps, nausea, and diarrhea in some people. You may need to take iron with a small amount of food to avoid this problem.
Milk, calcium and antacids should not be taken at the same time as iron supplements. You should wait at least 2 hours after having these foods before taking your iron supplements.
Foods that you should not eat at the same time as you take your iron include:
High fiber foods, such as whole grains, raw vegetables, and bran
Foods or drinks with caffeine
Some providers suggest taking a vitamin C supplement or drinking orange juice with your iron pill. This can help the iron absorb into your body. Drinking 8 ounces of fluid with an iron pill is also OK. “
It is a daily struggle getting things into her - but if you can find cereals high in iron; specialty drinks with iron boosts, and other foods that have high iron content, it can help. [list of foods high in iron.](https://www.nhs.uk/conditions/vitamins-and-minerals/iron/)
Our daughter took about three years to get healthy iron levels, so it is possible… it just takes time.
Best of luck, OP., It’s not milk that causes the poor absorption of iron, it’s the calcium. Most fake milks have added calcium, so that’s no good. We mix the liquid ferrous sulfate with a tiny bit of juice in a syringe. We also follow that up with some liquid vitamin C. Vitamin C helps with iron absorption., Flinstones with iron (rec by pediatrician, kiddo likes it well enough), lucky iron fish water for pancakes, and hulk muffins (spinach oat in a blender - easy and lots of recipes online, I add orange zest for better flavor and iron absorption)., We do Novaferrum <3, We use iron gummies with iron (II) glycinate. It causes less stomach problems than iron sulphate gummies.
Our child doesn't mind them, tastes a bit like an orange lolly. They also have a crunchy multivitamin that tastes like strawberry sherbet. They like that one. Also has a restricted diet., +1 for NovaFerrum Tasty. I had to search for it, and got doctor approval after getting the prescription stuff that was obviously not gonna happen. I wouldn't want to take that disgusting tasting stuff, either., So sorry to hear about transfusions❤
So Almond Breeze was better than cows milk in terms of iron deficiency? That sounds like something i could try, Thank you, My son takes these too! He eats them whole like candy., Second novaferrum., Iron Fish? 😯 interesting i googled it lol, He does not. Im thinking of trying flinstones tablets and crushing them into his bottle, Cow's milk blocks iron absorption, so always give iron at least 1/2 away from milk drinking if you can, and with vitamin c., He asked to drink less milk once we switched to the almond breeze (it has to be the extra creamy version or he won’t drink it). Textures are a big sensory trigger for him so he honestly would try to live on cows milk and eat as little as possible. He’s nonverbal but from what I can tell the almond milk was less filling than the cows milk which made him want to eat more foods. Less milk (cows or otherwise) is better. Calcium can block iron absorption. He also was very low energy in general from the anemia so that could have been contributing to the low drive for food as well., Youre very welcome. I hope it helps out.
I originally used a plastic common twist pill crusher but it wasnt doing the trick. I wven would break it into smaller pieces by hand then crush from there. Opted for a metal pill crusher with an actual crank and it does a much better job the more fine the better. And you really have to mix it up. Any leftover powder clumps and gets gross when the iron oxidizes (i think thats whats happening). If i can be of any further help feel free to ask here or dm., Great!!! Much easier when they eat them voluntarily:), My pediatrician also recommended novaferrum. I've been using the orange flavor and it with juice and water. I just got the raspberry flavor as well for when the orange runs out., Yaaas, the fish is where it's at!, Flintstones complete iron gummies or iron gummies?, My son was severely anemic this time last year and ended up needing transfusions. He was obsessed with cows milk. I switched him to almond breeze extra creamy, it has the closest taste/ texture to cows milk. His hematologist recommended novaferrum tasty instead of that horrible tasting prescription. It’s on Amazon and comes in different flavors. Iron is also more easily absorbed when paired with vitamin c so another supplement or orange juice, etc. my sons numbers are great now and getting him off cows milk increased his diet for more foods. He is still very picky but any new food is an accomplishment!, This is what i use for my son. I put it into an actual pill crusher and mix it in with 8 ounces of soy milk. I agree these iron pills taste gross but pulverized and mixed in my son doesnt seem to mind.
https://preview.redd.it/03f3bvy4ctnc1.jpeg?width=1170&format=pjpg&auto=webp&s=24cb4c53ec7b9963a7ccef9e5237ed5f9590ed7f, My autistic kid had confirmed borderline low iron levels. (It was checked due to sleep trouble- kid wouldnt sleep longer than 3 hours at a time) The doctor gave us a script for a liquid iron supplement, and even I could not blame my kid for not wanting to take that after I tasted a single drop of it.
I did some searching online for a better tasting alternative, then checked with the doctor and got the approval to give him NovaFerrum Tasty! Liquid Iron Supplement. She explained that while this OTC one wouldn't provide the same amount of iron as the script version, it does provide quite a bit so should be fine and to contact if symptoms don't start to improve within a few weeks.
Thankfully, my kid took the NovaFerrum stuff because it actually tastes like chocolate (they also make a raspberry flavored). While I don't know for sure, his sleep did show improvement and actually entered close to a "normal" routine over the past year since we started the iron supplement., Ugh I know the stuff, I hide it in smoothies. Then I read that it shouldn't be taken with food unless taking it without food leads to nausea.
I also recently got an iron fish, been using it in every dish I can, hoping it makes a difference., Will your kid eat seeds? Pumpkin seeds have a ton of iron and can work if your kid likes crunchy textures., My kids like the chocolate flavor of novaferrum on Amazon. https://a.co/d/4U2kKUs, Does he like gummies?, Lifeable Iron Gummies with Vitamin C - 20 mg - Great Tasting Natural Flavor Gummy Supplement - Gluten Free Vegetarian GMO-Free Chewable - for Iron Deficiency - for Adults, Men, Women - 90 Gummies https://a.co/d/djZvmmY
Iron must be taken with vitamin c or your body doesn't absorb it. My kid takes 6 of these a day to deal with iron and ferritin deficiency and it's slowly but surely climbing up. Very very picky eater and gobbles these right up, We use renzos. They're small chewable tablets and can be found on Amazon., Some compounding pharmacies have services for making medications more child-friendly!, Iron gummies are what we use, alongside a daily vitamin. We infuse *everything* we can get away with full of dark leafy greens, high iron foods.
Milk and iron do not blend well, either: it can cause pain and other digestive issues, even vomiting (we learned this the hard way). [source](https://medlineplus.gov/ency/article/007478.htm#:~:text=Iron%20is%20best%20absorbed%20on,same%20time%20as%20iron%20supplements)
“Iron is best absorbed on an empty stomach. Yet, iron supplements can cause stomach cramps, nausea, and diarrhea in some people. You may need to take iron with a small amount of food to avoid this problem.
Milk, calcium and antacids should not be taken at the same time as iron supplements. You should wait at least 2 hours after having these foods before taking your iron supplements.
Foods that you should not eat at the same time as you take your iron include:
High fiber foods, such as whole grains, raw vegetables, and bran
Foods or drinks with caffeine
Some providers suggest taking a vitamin C supplement or drinking orange juice with your iron pill. This can help the iron absorb into your body. Drinking 8 ounces of fluid with an iron pill is also OK. “
It is a daily struggle getting things into her - but if you can find cereals high in iron; specialty drinks with iron boosts, and other foods that have high iron content, it can help. [list of foods high in iron.](https://www.nhs.uk/conditions/vitamins-and-minerals/iron/)
Our daughter took about three years to get healthy iron levels, so it is possible… it just takes time.
Best of luck, OP., It’s not milk that causes the poor absorption of iron, it’s the calcium. Most fake milks have added calcium, so that’s no good. We mix the liquid ferrous sulfate with a tiny bit of juice in a syringe. We also follow that up with some liquid vitamin C. Vitamin C helps with iron absorption., Flinstones with iron (rec by pediatrician, kiddo likes it well enough), lucky iron fish water for pancakes, and hulk muffins (spinach oat in a blender - easy and lots of recipes online, I add orange zest for better flavor and iron absorption)., We do Novaferrum <3, We use iron gummies with iron (II) glycinate. It causes less stomach problems than iron sulphate gummies.
Our child doesn't mind them, tastes a bit like an orange lolly. They also have a crunchy multivitamin that tastes like strawberry sherbet. They like that one. Also has a restricted diet., +1 for NovaFerrum Tasty. I had to search for it, and got doctor approval after getting the prescription stuff that was obviously not gonna happen. I wouldn't want to take that disgusting tasting stuff, either., So sorry to hear about transfusions❤
So Almond Breeze was better than cows milk in terms of iron deficiency? That sounds like something i could try, Thank you, My son takes these too! He eats them whole like candy., Second novaferrum., Iron Fish? 😯 interesting i googled it lol, He does not. Im thinking of trying flinstones tablets and crushing them into his bottle, Cow's milk blocks iron absorption, so always give iron at least 1/2 away from milk drinking if you can, and with vitamin c., He asked to drink less milk once we switched to the almond breeze (it has to be the extra creamy version or he won’t drink it). Textures are a big sensory trigger for him so he honestly would try to live on cows milk and eat as little as possible. He’s nonverbal but from what I can tell the almond milk was less filling than the cows milk which made him want to eat more foods. Less milk (cows or otherwise) is better. Calcium can block iron absorption. He also was very low energy in general from the anemia so that could have been contributing to the low drive for food as well., Youre very welcome. I hope it helps out.
I originally used a plastic common twist pill crusher but it wasnt doing the trick. I wven would break it into smaller pieces by hand then crush from there. Opted for a metal pill crusher with an actual crank and it does a much better job the more fine the better. And you really have to mix it up. Any leftover powder clumps and gets gross when the iron oxidizes (i think thats whats happening). If i can be of any further help feel free to ask here or dm., Great!!! Much easier when they eat them voluntarily:), My pediatrician also recommended novaferrum. I've been using the orange flavor and it with juice and water. I just got the raspberry flavor as well for when the orange runs out., Yaaas, the fish is where it's at!, Flintstones complete iron gummies or iron gummies?, My son was severely anemic this time last year and ended up needing transfusions. He was obsessed with cows milk. I switched him to almond breeze extra creamy, it has the closest taste/ texture to cows milk. His hematologist recommended novaferrum tasty instead of that horrible tasting prescription. It’s on Amazon and comes in different flavors. Iron is also more easily absorbed when paired with vitamin c so another supplement or orange juice, etc. my sons numbers are great now and getting him off cows milk increased his diet for more foods. He is still very picky but any new food is an accomplishment!, This is what i use for my son. I put it into an actual pill crusher and mix it in with 8 ounces of soy milk. I agree these iron pills taste gross but pulverized and mixed in my son doesnt seem to mind.
https://preview.redd.it/03f3bvy4ctnc1.jpeg?width=1170&format=pjpg&auto=webp&s=24cb4c53ec7b9963a7ccef9e5237ed5f9590ed7f, My autistic kid had confirmed borderline low iron levels. (It was checked due to sleep trouble- kid wouldnt sleep longer than 3 hours at a time) The doctor gave us a script for a liquid iron supplement, and even I could not blame my kid for not wanting to take that after I tasted a single drop of it.
I did some searching online for a better tasting alternative, then checked with the doctor and got the approval to give him NovaFerrum Tasty! Liquid Iron Supplement. She explained that while this OTC one wouldn't provide the same amount of iron as the script version, it does provide quite a bit so should be fine and to contact if symptoms don't start to improve within a few weeks.
Thankfully, my kid took the NovaFerrum stuff because it actually tastes like chocolate (they also make a raspberry flavored). While I don't know for sure, his sleep did show improvement and actually entered close to a "normal" routine over the past year since we started the iron supplement., Ugh I know the stuff, I hide it in smoothies. Then I read that it shouldn't be taken with food unless taking it without food leads to nausea.
I also recently got an iron fish, been using it in every dish I can, hoping it makes a difference., Will your kid eat seeds? Pumpkin seeds have a ton of iron and can work if your kid likes crunchy textures., My kids like the chocolate flavor of novaferrum on Amazon. https://a.co/d/4U2kKUs, Does he like gummies?, Lifeable Iron Gummies with Vitamin C - 20 mg - Great Tasting Natural Flavor Gummy Supplement - Gluten Free Vegetarian GMO-Free Chewable - for Iron Deficiency - for Adults, Men, Women - 90 Gummies https://a.co/d/djZvmmY
Iron must be taken with vitamin c or your body doesn't absorb it. My kid takes 6 of these a day to deal with iron and ferritin deficiency and it's slowly but surely climbing up. Very very picky eater and gobbles these right up, We use renzos. They're small chewable tablets and can be found on Amazon., Some compounding pharmacies have services for making medications more child-friendly!, Iron gummies are what we use, alongside a daily vitamin. We infuse *everything* we can get away with full of dark leafy greens, high iron foods.
Milk and iron do not blend well, either: it can cause pain and other digestive issues, even vomiting (we learned this the hard way). [source](https://medlineplus.gov/ency/article/007478.htm#:~:text=Iron%20is%20best%20absorbed%20on,same%20time%20as%20iron%20supplements)
“Iron is best absorbed on an empty stomach. Yet, iron supplements can cause stomach cramps, nausea, and diarrhea in some people. You may need to take iron with a small amount of food to avoid this problem.
Milk, calcium and antacids should not be taken at the same time as iron supplements. You should wait at least 2 hours after having these foods before taking your iron supplements.
Foods that you should not eat at the same time as you take your iron include:
High fiber foods, such as whole grains, raw vegetables, and bran
Foods or drinks with caffeine
Some providers suggest taking a vitamin C supplement or drinking orange juice with your iron pill. This can help the iron absorb into your body. Drinking 8 ounces of fluid with an iron pill is also OK. “
It is a daily struggle getting things into her - but if you can find cereals high in iron; specialty drinks with iron boosts, and other foods that have high iron content, it can help. [list of foods high in iron.](https://www.nhs.uk/conditions/vitamins-and-minerals/iron/)
Our daughter took about three years to get healthy iron levels, so it is possible… it just takes time.
Best of luck, OP., It’s not milk that causes the poor absorption of iron, it’s the calcium. Most fake milks have added calcium, so that’s no good. We mix the liquid ferrous sulfate with a tiny bit of juice in a syringe. We also follow that up with some liquid vitamin C. Vitamin C helps with iron absorption., Flinstones with iron (rec by pediatrician, kiddo likes it well enough), lucky iron fish water for pancakes, and hulk muffins (spinach oat in a blender - easy and lots of recipes online, I add orange zest for better flavor and iron absorption)., We do Novaferrum <3, We use iron gummies with iron (II) glycinate. It causes less stomach problems than iron sulphate gummies.
Our child doesn't mind them, tastes a bit like an orange lolly. They also have a crunchy multivitamin that tastes like strawberry sherbet. They like that one. Also has a restricted diet., +1 for NovaFerrum Tasty. I had to search for it, and got doctor approval after getting the prescription stuff that was obviously not gonna happen. I wouldn't want to take that disgusting tasting stuff, either., So sorry to hear about transfusions❤
So Almond Breeze was better than cows milk in terms of iron deficiency? That sounds like something i could try, Thank you, My son takes these too! He eats them whole like candy., Second novaferrum., Iron Fish? 😯 interesting i googled it lol, He does not. Im thinking of trying flinstones tablets and crushing them into his bottle, Cow's milk blocks iron absorption, so always give iron at least 1/2 away from milk drinking if you can, and with vitamin c., He asked to drink less milk once we switched to the almond breeze (it has to be the extra creamy version or he won’t drink it). Textures are a big sensory trigger for him so he honestly would try to live on cows milk and eat as little as possible. He’s nonverbal but from what I can tell the almond milk was less filling than the cows milk which made him want to eat more foods. Less milk (cows or otherwise) is better. Calcium can block iron absorption. He also was very low energy in general from the anemia so that could have been contributing to the low drive for food as well., Youre very welcome. I hope it helps out.
I originally used a plastic common twist pill crusher but it wasnt doing the trick. I wven would break it into smaller pieces by hand then crush from there. Opted for a metal pill crusher with an actual crank and it does a much better job the more fine the better. And you really have to mix it up. Any leftover powder clumps and gets gross when the iron oxidizes (i think thats whats happening). If i can be of any further help feel free to ask here or dm., Great!!! Much easier when they eat them voluntarily:), My pediatrician also recommended novaferrum. I've been using the orange flavor and it with juice and water. I just got the raspberry flavor as well for when the orange runs out., Yaaas, the fish is where it's at!, Flintstones complete iron gummies or iron gummies?, My son was severely anemic this time last year and ended up needing transfusions. He was obsessed with cows milk. I switched him to almond breeze extra creamy, it has the closest taste/ texture to cows milk. His hematologist recommended novaferrum tasty instead of that horrible tasting prescription. It’s on Amazon and comes in different flavors. Iron is also more easily absorbed when paired with vitamin c so another supplement or orange juice, etc. my sons numbers are great now and getting him off cows milk increased his diet for more foods. He is still very picky but any new food is an accomplishment!, This is what i use for my son. I put it into an actual pill crusher and mix it in with 8 ounces of soy milk. I agree these iron pills taste gross but pulverized and mixed in my son doesnt seem to mind.
https://preview.redd.it/03f3bvy4ctnc1.jpeg?width=1170&format=pjpg&auto=webp&s=24cb4c53ec7b9963a7ccef9e5237ed5f9590ed7f, My autistic kid had confirmed borderline low iron levels. (It was checked due to sleep trouble- kid wouldnt sleep longer than 3 hours at a time) The doctor gave us a script for a liquid iron supplement, and even I could not blame my kid for not wanting to take that after I tasted a single drop of it.
I did some searching online for a better tasting alternative, then checked with the doctor and got the approval to give him NovaFerrum Tasty! Liquid Iron Supplement. She explained that while this OTC one wouldn't provide the same amount of iron as the script version, it does provide quite a bit so should be fine and to contact if symptoms don't start to improve within a few weeks.
Thankfully, my kid took the NovaFerrum stuff because it actually tastes like chocolate (they also make a raspberry flavored). While I don't know for sure, his sleep did show improvement and actually entered close to a "normal" routine over the past year since we started the iron supplement., Ugh I know the stuff, I hide it in smoothies. Then I read that it shouldn't be taken with food unless taking it without food leads to nausea.
I also recently got an iron fish, been using it in every dish I can, hoping it makes a difference., Will your kid eat seeds? Pumpkin seeds have a ton of iron and can work if your kid likes crunchy textures., My kids like the chocolate flavor of novaferrum on Amazon. https://a.co/d/4U2kKUs, Does he like gummies?, Lifeable Iron Gummies with Vitamin C - 20 mg - Great Tasting Natural Flavor Gummy Supplement - Gluten Free Vegetarian GMO-Free Chewable - for Iron Deficiency - for Adults, Men, Women - 90 Gummies https://a.co/d/djZvmmY
Iron must be taken with vitamin c or your body doesn't absorb it. My kid takes 6 of these a day to deal with iron and ferritin deficiency and it's slowly but surely climbing up. Very very picky eater and gobbles these right up, We use renzos. They're small chewable tablets and can be found on Amazon., Some compounding pharmacies have services for making medications more child-friendly!, Iron gummies are what we use, alongside a daily vitamin. We infuse *everything* we can get away with full of dark leafy greens, high iron foods.
Milk and iron do not blend well, either: it can cause pain and other digestive issues, even vomiting (we learned this the hard way). [source](https://medlineplus.gov/ency/article/007478.htm#:~:text=Iron%20is%20best%20absorbed%20on,same%20time%20as%20iron%20supplements)
“Iron is best absorbed on an empty stomach. Yet, iron supplements can cause stomach cramps, nausea, and diarrhea in some people. You may need to take iron with a small amount of food to avoid this problem.
Milk, calcium and antacids should not be taken at the same time as iron supplements. You should wait at least 2 hours after having these foods before taking your iron supplements.
Foods that you should not eat at the same time as you take your iron include:
High fiber foods, such as whole grains, raw vegetables, and bran
Foods or drinks with caffeine
Some providers suggest taking a vitamin C supplement or drinking orange juice with your iron pill. This can help the iron absorb into your body. Drinking 8 ounces of fluid with an iron pill is also OK. “
It is a daily struggle getting things into her - but if you can find cereals high in iron; specialty drinks with iron boosts, and other foods that have high iron content, it can help. [list of foods high in iron.](https://www.nhs.uk/conditions/vitamins-and-minerals/iron/)
Our daughter took about three years to get healthy iron levels, so it is possible… it just takes time.
Best of luck, OP., It’s not milk that causes the poor absorption of iron, it’s the calcium. Most fake milks have added calcium, so that’s no good. We mix the liquid ferrous sulfate with a tiny bit of juice in a syringe. We also follow that up with some liquid vitamin C. Vitamin C helps with iron absorption., Flinstones with iron (rec by pediatrician, kiddo likes it well enough), lucky iron fish water for pancakes, and hulk muffins (spinach oat in a blender - easy and lots of recipes online, I add orange zest for better flavor and iron absorption)., We do Novaferrum <3, We use iron gummies with iron (II) glycinate. It causes less stomach problems than iron sulphate gummies.
Our child doesn't mind them, tastes a bit like an orange lolly. They also have a crunchy multivitamin that tastes like strawberry sherbet. They like that one. Also has a restricted diet., +1 for NovaFerrum Tasty. I had to search for it, and got doctor approval after getting the prescription stuff that was obviously not gonna happen. I wouldn't want to take that disgusting tasting stuff, either., So sorry to hear about transfusions❤
So Almond Breeze was better than cows milk in terms of iron deficiency? That sounds like something i could try, Thank you, My son takes these too! He eats them whole like candy., Second novaferrum., Iron Fish? 😯 interesting i googled it lol, He does not. Im thinking of trying flinstones tablets and crushing them into his bottle, Cow's milk blocks iron absorption, so always give iron at least 1/2 away from milk drinking if you can, and with vitamin c., He asked to drink less milk once we switched to the almond breeze (it has to be the extra creamy version or he won’t drink it). Textures are a big sensory trigger for him so he honestly would try to live on cows milk and eat as little as possible. He’s nonverbal but from what I can tell the almond milk was less filling than the cows milk which made him want to eat more foods. Less milk (cows or otherwise) is better. Calcium can block iron absorption. He also was very low energy in general from the anemia so that could have been contributing to the low drive for food as well., Youre very welcome. I hope it helps out.
I originally used a plastic common twist pill crusher but it wasnt doing the trick. I wven would break it into smaller pieces by hand then crush from there. Opted for a metal pill crusher with an actual crank and it does a much better job the more fine the better. And you really have to mix it up. Any leftover powder clumps and gets gross when the iron oxidizes (i think thats whats happening). If i can be of any further help feel free to ask here or dm., Great!!! Much easier when they eat them voluntarily:), My pediatrician also recommended novaferrum. I've been using the orange flavor and it with juice and water. I just got the raspberry flavor as well for when the orange runs out., Yaaas, the fish is where it's at!
|
Kid obsessed with Grounded videos and making videos
|
Hi all,
My little boy has autism and is 7.
He is obsessed with Goanimate grounded videos, and logo blooper videos. Does anyones else child have this fascination ?
He now is using Kinemaster to make his own videos aswell as Plotagon.. I'm really proud of what he creates although have no idea what they are!
Just interested if anyones children are similar or have any advice.
TIA
​
|
My son loves those grounded videos (assuming we're talking about the same ones). I allow most of them but i keep an ear out for swearing and abusive language because there's some videos that are recommended on YouTube that are not cool. Otherwise it seems pretty normal - kids like to hear other kids get in trouble, they get in trouble for doing bad things and sometimes we talk about why they got in trouble afterwards. And they repeat themselves which is a fan favorite in the asd community.
He's also got a favorite vlog/blog so we do sometimes make videos together. It's fun watching him try to do it on his own . We might work on a script if he stays interested. I don't want to take something fun and make it uncool lol. , It’s amazing how creative kids can be! My son is 6 and he loves photoshopping different things together. He makes all kinds of cool crazy things and even picture stories. He also loves creating his own roblox games on roblox studio. He publishes them and they are definitely games a young child made and wouldn’t make much sense to anyone else lol but it’s super fun for our whole family to get on and play some of the games he made with him., Oh yes, my son watches them every now and then, My kiddo cranks out 457 frame stop motion animations from an iPhone with a cracked screen including soundtrack and credits. There is a woman on the show love on the spectrum who teaches autistic kids animation, My 18yo son has this same passion, he has an Youtube channel with almost 2000 videos. He found out about those when he was around 10 and I once tried to block him from watching the logo blooper videos (Klasky Csupo, am I right?), because sometimes it seemed like it made him agitated and thus, unhealthy. The feelings of guilty and remorse became too unbearing and now I let him watch and even MAKE them.
Well, it fulfills him, so I guess it's for the better. He also loves domino toppling., Also just to add.. my lad watches Youtube at 2x fast !!, 100% the same !! Its crazy !, He made this video using Plotagon, It was his not so subtle way to ask me to download some editors 😅 https://youtu.be/bKFFAuZ0mnU, My son loves those grounded videos (assuming we're talking about the same ones). I allow most of them but i keep an ear out for swearing and abusive language because there's some videos that are recommended on YouTube that are not cool. Otherwise it seems pretty normal - kids like to hear other kids get in trouble, they get in trouble for doing bad things and sometimes we talk about why they got in trouble afterwards. And they repeat themselves which is a fan favorite in the asd community.
He's also got a favorite vlog/blog so we do sometimes make videos together. It's fun watching him try to do it on his own . We might work on a script if he stays interested. I don't want to take something fun and make it uncool lol. , It’s amazing how creative kids can be! My son is 6 and he loves photoshopping different things together. He makes all kinds of cool crazy things and even picture stories. He also loves creating his own roblox games on roblox studio. He publishes them and they are definitely games a young child made and wouldn’t make much sense to anyone else lol but it’s super fun for our whole family to get on and play some of the games he made with him., Oh yes, my son watches them every now and then, My kiddo cranks out 457 frame stop motion animations from an iPhone with a cracked screen including soundtrack and credits. There is a woman on the show love on the spectrum who teaches autistic kids animation, My 18yo son has this same passion, he has an Youtube channel with almost 2000 videos. He found out about those when he was around 10 and I once tried to block him from watching the logo blooper videos (Klasky Csupo, am I right?), because sometimes it seemed like it made him agitated and thus, unhealthy. The feelings of guilty and remorse became too unbearing and now I let him watch and even MAKE them.
Well, it fulfills him, so I guess it's for the better. He also loves domino toppling., Also just to add.. my lad watches Youtube at 2x fast !!, 100% the same !! Its crazy !, He made this video using Plotagon, It was his not so subtle way to ask me to download some editors 😅 https://youtu.be/bKFFAuZ0mnU, My son loves those grounded videos (assuming we're talking about the same ones). I allow most of them but i keep an ear out for swearing and abusive language because there's some videos that are recommended on YouTube that are not cool. Otherwise it seems pretty normal - kids like to hear other kids get in trouble, they get in trouble for doing bad things and sometimes we talk about why they got in trouble afterwards. And they repeat themselves which is a fan favorite in the asd community.
He's also got a favorite vlog/blog so we do sometimes make videos together. It's fun watching him try to do it on his own . We might work on a script if he stays interested. I don't want to take something fun and make it uncool lol. , It’s amazing how creative kids can be! My son is 6 and he loves photoshopping different things together. He makes all kinds of cool crazy things and even picture stories. He also loves creating his own roblox games on roblox studio. He publishes them and they are definitely games a young child made and wouldn’t make much sense to anyone else lol but it’s super fun for our whole family to get on and play some of the games he made with him., Oh yes, my son watches them every now and then, My kiddo cranks out 457 frame stop motion animations from an iPhone with a cracked screen including soundtrack and credits. There is a woman on the show love on the spectrum who teaches autistic kids animation, My 18yo son has this same passion, he has an Youtube channel with almost 2000 videos. He found out about those when he was around 10 and I once tried to block him from watching the logo blooper videos (Klasky Csupo, am I right?), because sometimes it seemed like it made him agitated and thus, unhealthy. The feelings of guilty and remorse became too unbearing and now I let him watch and even MAKE them.
Well, it fulfills him, so I guess it's for the better. He also loves domino toppling., Also just to add.. my lad watches Youtube at 2x fast !!, 100% the same !! Its crazy !, He made this video using Plotagon, It was his not so subtle way to ask me to download some editors 😅 https://youtu.be/bKFFAuZ0mnU, My son loves those grounded videos (assuming we're talking about the same ones). I allow most of them but i keep an ear out for swearing and abusive language because there's some videos that are recommended on YouTube that are not cool. Otherwise it seems pretty normal - kids like to hear other kids get in trouble, they get in trouble for doing bad things and sometimes we talk about why they got in trouble afterwards. And they repeat themselves which is a fan favorite in the asd community.
He's also got a favorite vlog/blog so we do sometimes make videos together. It's fun watching him try to do it on his own . We might work on a script if he stays interested. I don't want to take something fun and make it uncool lol. , It’s amazing how creative kids can be! My son is 6 and he loves photoshopping different things together. He makes all kinds of cool crazy things and even picture stories. He also loves creating his own roblox games on roblox studio. He publishes them and they are definitely games a young child made and wouldn’t make much sense to anyone else lol but it’s super fun for our whole family to get on and play some of the games he made with him., Oh yes, my son watches them every now and then, My kiddo cranks out 457 frame stop motion animations from an iPhone with a cracked screen including soundtrack and credits. There is a woman on the show love on the spectrum who teaches autistic kids animation, My 18yo son has this same passion, he has an Youtube channel with almost 2000 videos. He found out about those when he was around 10 and I once tried to block him from watching the logo blooper videos (Klasky Csupo, am I right?), because sometimes it seemed like it made him agitated and thus, unhealthy. The feelings of guilty and remorse became too unbearing and now I let him watch and even MAKE them.
Well, it fulfills him, so I guess it's for the better. He also loves domino toppling., Also just to add.. my lad watches Youtube at 2x fast !!, 100% the same !! Its crazy !, He made this video using Plotagon, It was his not so subtle way to ask me to download some editors 😅 https://youtu.be/bKFFAuZ0mnU
|
Kid strugglung to enter some places
|
I'm trying to understand something my kid (5 years old, ASD L2) does. She is very adventurous and has no problem exploring new places and doing new things. But there are two places where she struggles. Gymnastics and music therapy. When we go to gymnastics, she's totally fine the whole way there and going into the building. But once we get to the door to the gym area (which is massive), she hesitates and says she's scared about entering the gym. It takes her about 5 minutes of running around the reception area and covering her ears before she, with lots of encouragement, hesitantly steps into the room. Once she's in the room she is fine again and has a great time. It's the same at music therapy (which she also loves). She's fine the whole way there. But stepping into the music therapists office is a problem. We usually sit outside for five minutes while she tells me she is feeling scared and then with lots of encouragement she tentatively steps over the threshold and once inside she's fine and has a great time. It's obvious she's feeling anxious, but I'm just struggling to understand why. She has no problem entering preschool, OT, ST, etc. I'm hoping by better understanding why she is feeling anxious, I could help her overcome these feelings of anxiety. I saw something in that Korean show about the autistic lawyer Extraordinary Attorney Woo where she does a little routine to calm herself before entering certain rooms. Thanks in advance.
|
Could these environments be overstimulating? Something that helps my kiddo is letting her bring a comfort items into these types of places and wearing noise cancelling headphones at first., Gym is a big room with hard walls so very different acoustically from the hall outside. Most music rooms have acoustic baffles and other sound dampening features.
Could it be crossing the threshold from one sound environment to a completely different one?, I've seen this at one of the classes that I go to with my kid (a like mini gym class). One of the other kids has this issue going into the room. She is running around and playing before class with my kid and the other kids in the class. Then gets super anxious walking into the classroom; stops right at the doorway. She seems fine once she is in though. Just needs encouragement. But right at the door the class room she stops and seems scared. Class room is not large., Maybe. It could be the size of the space... I once took her to a theatre show and when she saw the space she became nervous and very anxious about entering (again, once I was able to encourage her to enter, she was fine). However, the music therapists office is small / doesn't have any sort of sound dampening. There are some things in the music therapists office (like a bicycle horn) that she hates. She also hates hand dryers in public bathrooms. That with the hands over the ears suggests it might be all driven by sensitivity to sound like you say., Could these environments be overstimulating? Something that helps my kiddo is letting her bring a comfort items into these types of places and wearing noise cancelling headphones at first., Gym is a big room with hard walls so very different acoustically from the hall outside. Most music rooms have acoustic baffles and other sound dampening features.
Could it be crossing the threshold from one sound environment to a completely different one?, I've seen this at one of the classes that I go to with my kid (a like mini gym class). One of the other kids has this issue going into the room. She is running around and playing before class with my kid and the other kids in the class. Then gets super anxious walking into the classroom; stops right at the doorway. She seems fine once she is in though. Just needs encouragement. But right at the door the class room she stops and seems scared. Class room is not large., Maybe. It could be the size of the space... I once took her to a theatre show and when she saw the space she became nervous and very anxious about entering (again, once I was able to encourage her to enter, she was fine). However, the music therapists office is small / doesn't have any sort of sound dampening. There are some things in the music therapists office (like a bicycle horn) that she hates. She also hates hand dryers in public bathrooms. That with the hands over the ears suggests it might be all driven by sensitivity to sound like you say., Could these environments be overstimulating? Something that helps my kiddo is letting her bring a comfort items into these types of places and wearing noise cancelling headphones at first., Gym is a big room with hard walls so very different acoustically from the hall outside. Most music rooms have acoustic baffles and other sound dampening features.
Could it be crossing the threshold from one sound environment to a completely different one?, I've seen this at one of the classes that I go to with my kid (a like mini gym class). One of the other kids has this issue going into the room. She is running around and playing before class with my kid and the other kids in the class. Then gets super anxious walking into the classroom; stops right at the doorway. She seems fine once she is in though. Just needs encouragement. But right at the door the class room she stops and seems scared. Class room is not large., Maybe. It could be the size of the space... I once took her to a theatre show and when she saw the space she became nervous and very anxious about entering (again, once I was able to encourage her to enter, she was fine). However, the music therapists office is small / doesn't have any sort of sound dampening. There are some things in the music therapists office (like a bicycle horn) that she hates. She also hates hand dryers in public bathrooms. That with the hands over the ears suggests it might be all driven by sensitivity to sound like you say., Could these environments be overstimulating? Something that helps my kiddo is letting her bring a comfort items into these types of places and wearing noise cancelling headphones at first., Gym is a big room with hard walls so very different acoustically from the hall outside. Most music rooms have acoustic baffles and other sound dampening features.
Could it be crossing the threshold from one sound environment to a completely different one?, I've seen this at one of the classes that I go to with my kid (a like mini gym class). One of the other kids has this issue going into the room. She is running around and playing before class with my kid and the other kids in the class. Then gets super anxious walking into the classroom; stops right at the doorway. She seems fine once she is in though. Just needs encouragement. But right at the door the class room she stops and seems scared. Class room is not large., Maybe. It could be the size of the space... I once took her to a theatre show and when she saw the space she became nervous and very anxious about entering (again, once I was able to encourage her to enter, she was fine). However, the music therapists office is small / doesn't have any sort of sound dampening. There are some things in the music therapists office (like a bicycle horn) that she hates. She also hates hand dryers in public bathrooms. That with the hands over the ears suggests it might be all driven by sensitivity to sound like you say.
|
Kiddo getting shots
|
My girl needs to get caught up on a handful of vaccines next week. I anticipate 2-3 needles is what she will need. Our last pediatrician was not kind and sort of traumatized her. It took a long time to get in with this new one. Anywho… I’m nervous about how this will go. She doesn’t have much in receptive language so telling her what’s going to happen wont get us very far. I don’t want her to freak out and never want to set foot in their office again. There’s a chance it may go that way anyways…. I read online that you can apply lidocaine cream to the arms before the appointment and it may relieve some of the pinch. Has anyone done this? Should I call the new doctor and ask if this is okay with him?
|
We request two nurses for the appointment. And we both take him. Grab an arm each and pin, the nurses do them simultaneously, we have chocolate buttons on standby, tablet showing videos throughout, lots of cuddles, hand over the tablet to play games, and it's all forgotten by the time we get to the car. It's not nice, but it's fast and done., I would talk to the pediatrician and ask what the plan is for shots. We also had a crappy pediatrician who sucked at dealing with autistic children. Several, in fact. We switched to a pediatrician that was affiliated with our local children’s hospital, and it was really like night and day. They sat him on the table, had a nurse planted on each side, and the doctor gave a signal and they each gave him a shot in the arm so fast he didn’t even react. It was seriously amazing., I have done the lidocaine patches. Got them from our pharmacist over the counter. My son barely looked up from his iPad getting two needles in one arm., Please explain to her what will happen at the appointment. Watch videos if you can find some on YouTube. I’m sure she’ll understand at least some of it and it can only help to familiarize her with the process., I use an ice pack for ten minutes before and a shot blocker [shot blocker](https://a.co/d/bQG7lgQ)and bring their blankets and a lollipop and they sit on my lap and I hold down the arms
It’s never fun but this is the best I can offer, Lidocaine before--covered in cling wrap, a video they like to distract. A childrens hospital we go to has a program specifically for this., I always gave my kiddo Tylenol before hand. She didn’t cry when I did, Social stories and child life specialists are helpful here. Lidocaine 4% otc 30 min before over where they’re getting shots and covered with a bandaid. Dose is dependent on height and weight (ask ahead of time for specific muscle site or just get a nurse visit 30 min before doctor visit and they’ll do it for you), I feel like I’ll just be bear hugging her and then comforting her when it’s over. Honestly I’m probably more nervous than it’s worth but I can’t help it… that’s my baby! 😂 I’m planning on having her favorite treat in my bag and the tablet ready to go for when we’re done. I wish I could communicate it to her and warn her instead of just making it happen, This new doctor seems very in tune with the autism realm. We just saw him for her brother yesterday and I had her with me. We talked a little bit not much about her. I feel he and the nurses will be prepared after meeting her. My last doc… just was horrid. Definitely took the “hold her down and get over it” attitude. I think this guy will be so much more patient and helpful. I’m praying that he will be at least. We need a good doctor by our side, Did you tell your doc ahead of time?, Wait since when is dose depended on height and weight? Because a newborn gets the same amount as a 3 year old in my area., In Canada (BC), mine was done at a public health office by nurses, and I never called ahead. They saw me take the patch off and didn't seem to care. They had no objection to it., Really? Here are the dosing guidelines
https://uihc.org/childrens/educational-resources/using-lidocaine-lmx4-needle-pain, This seems to be for lidocaine?, Oh sorry I was talking about the shots not lidocaine. That was my fault
|
LAUSD school question
|
My autistic son will be attending kindergarten. I wanted to know if he can attend any LAUSD school or does it have to be his assign home school only.
|
You will have to request an intra district permit for him to attend a school other than his assigned school, even in the same district., Like previous person said you would need a infra district permit unless the home school does not have the appropriate program for him. In that case you would have a special education permit, Thank you so much!!, I appreciate the information🙏🏼, You will have to request an intra district permit for him to attend a school other than his assigned school, even in the same district., Like previous person said you would need a infra district permit unless the home school does not have the appropriate program for him. In that case you would have a special education permit, Thank you so much!!, I appreciate the information🙏🏼, You will have to request an intra district permit for him to attend a school other than his assigned school, even in the same district., Like previous person said you would need a infra district permit unless the home school does not have the appropriate program for him. In that case you would have a special education permit, Thank you so much!!, I appreciate the information🙏🏼, You will have to request an intra district permit for him to attend a school other than his assigned school, even in the same district., Like previous person said you would need a infra district permit unless the home school does not have the appropriate program for him. In that case you would have a special education permit, Thank you so much!!, I appreciate the information🙏🏼
|
LFA
|
Hello. I very recently found out my son is autistic ive had a good idea of that for a while, but the official diagnosis was pretty recent.
Anyway, he likes to chew on things, and i want to avoid him swallowing something bad. Does anyone have any tips or tricks or products that may help?.
Thanks for any advice
|
A few of my kids have had a few different necklaces with chewy items on them. I think one was a jewel looking thing and another was like a baton looking thing. All the kids liked the donut shaped ones. We got them off amazon. Try looking for autism chewing necklace., A few of my kids have had a few different necklaces with chewy items on them. I think one was a jewel looking thing and another was like a baton looking thing. All the kids liked the donut shaped ones. We got them off amazon. Try looking for autism chewing necklace., A few of my kids have had a few different necklaces with chewy items on them. I think one was a jewel looking thing and another was like a baton looking thing. All the kids liked the donut shaped ones. We got them off amazon. Try looking for autism chewing necklace., A few of my kids have had a few different necklaces with chewy items on them. I think one was a jewel looking thing and another was like a baton looking thing. All the kids liked the donut shaped ones. We got them off amazon. Try looking for autism chewing necklace.
|
Lack of empathy / feeling anger towards parents of NT kids
|
Ok so first of all I feel like an asshole / horrible person for this in general and I’m hoping someone else has dealt with this or can help me.
My child has an ultra rare genetic condition + autism. He’s 3, completely non verbal, doesn’t walk yet, and only eats like 4 foods. Since he was born life has been a challenge. He had a NICU stay and has been in physical occupational and speech therapy since around 10 months. He now gets school based therapy as well as private therapy. The school based therapy takes place in a school several times a week but he doesn’t go to the school. We just bring him there for the sessions.
In addition to the private therapies we also take him for weeks long physical therapy intensives. This essentially means packing the whole family up and going to a different city to attend multiple physical therapy sessions per day for my son.
These have been amazing but are an incredible amount of money and work for us.
OK so onto the problem.
When I read or hear or am told pretty much anything from the parents of a neurotypical child about a struggle they might be having I feel absolute rage.
I realize this is coming mostly from a place of devastation and jealousy that my life is so hard but I always considered “all people’s problems are valid to them” until recently.
Just this morning I read a post from a mom struggling to get her typically developing kid to eat. She said something like “it’s getting hard to go out to eat bc he’s so picky” cue rage from me.
Oh, it’s hard for you to go out to eat?? Poor you. My child has never eaten a single thing my husband or I didn’t pack for him. From anywhere. He eats the same thing for his meals every. Single. Day. It takes us *months* to introduce a new food to him.
Going out to eat to a restaurant with him is simply not something we even think to do.
Other examples, we were invited to go with our family to a tropical destination with friends and their families. I felt so angry that they even asked bc have you met my fucking life? I can’t bring this kid to that. My sibling complains about her daughter having very standard 6 yo problems and I want to scream that when my kid is 6 I’ll still be changing his poopy diapers.
My bff complains about driving her kids to sports and I want to scream that my kid will never play sports.
I’m losing my empathy for others and I hate it.
Note I am in therapy and have been discussing this with my therapist and will continue to do so. I think I was just hoping someone here could relate.
Does anyone? Or am I doomed to be a horrible person who has no room to care about others forever? This is the opposite of how I used to be.
|
I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜, I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜, I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜, I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜, I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜, I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜, I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜, I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜, I'm so sorry. What you and your child are experiencing is so hard, and your feelings are valid. Ive had similar feelings (to a lesser degree) and I've found it really helped to focus on coping and finding joy in my own life. That's where the feelings stemmed from for me, it wasn't actually anger but more like jealousy or resentment that festered into rage. So I changed my script, like cognitive behavioral therapy style. Yeah getting my kid showered and dressed every day is a literal battle, but also I'm a damn good mom and parenting ninja, nobody else could do this for him as well as I do it, I'm the best mom for my son and thats amazing. I also deleted social media (all of it, FB, reddit, instagram) for a few months because i found it fueled my rage rather than helping me focus on what made me happy. That worked for me, it might be something different for you. I'm glad you have the support of a therapist. Yes life is unfair, but sometimes the way we think about it forces us to suffer more than is necessary., No advice but I definitely relate. I have felt visceral rage after seeing a post in a mom group complaining about their child talking too much/ asking too many question. I would die happy if my child asked me questions. I hate feeling like this too., I don’t think it makes you a horrible person, I get it. My daughter’s 8, she has an extremely rare chromosomal deletion, she’s non-verbal, she has a load of health conditions, she’s incontinent. I love her more than life itself, but it’s hard to empathise sometimes.
I had a colleague complain that her 3 year old son says her name too much, she kept saying ‘Oh he’s always going on about how he wants his Mummy, I love you Mummy, I want my Mummy.’ Great, my daughter has never said my name or said she loves me. I’ve made my peace with that, sure, but I’d be lying if I said I wouldn’t mind hearing my daughter say ‘I love you Dad’ one time or another.
I’m in hospital with my daughter at the moment and have been for over two weeks. My brother texted me over the weekend to say how lucky I am I only have one kid because his two sons are arguing. I love my daughter, I always planned to have maybe two or three kids with my wife but things change.
But then? Having kids is hard anyway. Being a parent is hard. Sometimes I blatantly feel like nobody understands me, not that my problems are worse than others, just that nobody gets it. And I don’t like that about myself, I don’t think it makes me a good person, it’s just how I feel. I’ve never been the type of guy to want pity but being a widowed dad to a profoundly disabled kid, you get a lot of it.
People say comparison is the thief of joy, and to an extent? They’re right. But I also think comparison is human, it’s part of everything. I don’t enjoy being jealous of others, but I am sometimes. And I’m working on it., I can only speak for myself, but I need to be able to express the mean and unfair thoughts. It's almost like a boil that needs to be drained. Sure, I wish the boil wasn't there, but it is and it is festering. I have to let it out. I need a safe person who knows me well enough to know that I don't 100% mean everything I am saying, and I understand life isn't the pain olympics, and they will just listen and validate me. After I vent it all out, I can be rational again., Aside from struggling to be able to accept others' issues as valid, it seems like you're in this loop where you're in competition to have it the worst. I say this as someone who sees this trait in myself at times. My child is so far behind all his peers, but since I'm working harder as his parent, at least we're still "winning" at struggling. It's really a self-destructive martyr syndrome internal dialogue that needs to be nipped in the bud., I experienced rage like this when I was dealing with infertility. I mean absolute full-body heat waves of rage whenever anyone complained about anything to do with their children or pregnancy. Therapy really helped, and just time. I hope that your support system continues to grow and lift you and your family up., I see it as telling someone they can’t be tired because they got 8 hours of sleep and I only got 3., Totally get where you’re at! But not actually even to the same level, but my son does have high support needs in a lot of areas at level 3 as well as mobility issues and scoliosis, but still NOT e same.
What is really hard is EXTRACT youre mind from your situation when you are listening to others. The alternative is: they don’t talk to you about ANYTHING and trust me, that is so much more isolating.
It’s basically, oh your kid is walking late? Well mine may never walk, oh, your kid hates veggies? well my kid hates eating in general.
Sooner or later they might just talk to you about the weather and that’s it.
I remember not being able to talk to other moms during the newborn stage who had it worse than me because everything was a competition of not only who has the hardest kid, but who is super mom and handling it better. I just stopped venting and my world and theirs got smaller.
Also, now my kid has severe autism, so I guess, I win??
What I’m trying to say, feel free to vent to them about your kid, LISTEN to them when they struggle with theirs. It’s not a competition, because we’re all losers at some point with our kids.
Keep friendships where you can but also, disengage from the ones that no longer serve you as long as you’re 100% sure it’s not in your best interest to keep them.
Also, I get that your just venting to us on Reddit and that rage has probably not came out lol., My biggest issue, that leads to the anger and resentment feelings, is when NT parents try to relate… “oh yea, my child did that too” or “have you tried (insert strategy that would never work for a ND child)?” I want to slap my sister when she compares my child to hers. I get that she is trying to relate or show empathy, but it is god damn infuriating for some reason., Are you sure you are not me? I swear I could have written 99% of this. The NICU. The food. The poopy diapers (I just changed one). OT PT Speech since forever.
I feel you 100%.
It is hard not to think "F!@#ing Neurotypical Parent Problems" often.
Part of the issue, I think, is that Neurotypical Parents don't seem to have much empathy for other types of families (like ours). Plus, those parents [exclude our families](https://themighty.com/topic/disability/child-disability-not-invited-birthday-party/) because our child is different (IMHO the parents exclude disabled kids more than their kids)., It's hard not to compare. I get it.
The vacation invite sounds like it's coming from a good place, imo. We don't get to do a lot of things like that, but I appreciate being invited even when it's an easy no from us. I think that sounds like a case of wanting to include you.
My sister is taking her kids and my mom to Disney World next month. We would never be able to swing a trip like that with our son and would have declined if we were invited. But we weren't invited, and that really hurt my feelings. I know that's irrational, but it's how I feel.
I just try to control what I can control. I used to get mad and now I kind of throw my hands up and laugh it off. Others aren't going to understand our situation until/unless they live it themselves and that's okay.
One thing I'll add that's been difficult for me personally - it's not just parents of NT kids. What I struggle with now is other ND parents. I've got an acquaintance with a son the same age as mine, who's also autistic. My son needs relatively low support but there's still things we can't do (eat out, travel). It's clear this person doesn't know many other ND parents and so she sends a lot of "we're in this together!" type affirmations that I genuinely appreciate...while her child is flying and eating literally all over the world. And that makes me jealous and it shouldn't and I hate that it does.
On the flipside, we have a non-blood family member with a nonverbal son. And I feel tremendous guilt sharing things about my son's speech progress, or something funny he said, or something he's doing that this nonverbal boy can't do. And I shouldn't and I hate that I feel that guilt.
I think my point is there's always someone to compare to. There's always going to be someone who has it better and someone who has it worse. My son isn't neurotypical enough to fit in with the NT kids or for the NT parents to understand our lives, and on the ND side he's in that gray area between low and medium support that makes us feel alone even within this community.
It sounds like you've got the self-awareness to work through the anger and hopefully come out the other side. I wish you nothing but the best., Ah this is like me. I find I can’t be friends with parents with NT kids, because it’s too sad and I’m too jealous. Everything is a pissing contest., Absolutely understand you but this is a game with no winner. Some could easy say that to you, well at least their kid is alive or well at least your not in an active war zone and on and on, I have trouble not holding myself to NT parent standards. It leads to a lot of anger at myself and then anger at others. We need national protection that guarantees care for all kids with development, genetic and mental disorders have free/low cost medical care. If your child is disabled I believe a parent should qualify for disability payments to assist with living costs.
If we could afford to properly care for our kids, life would be so much easier. I don't care if I never go on a tropical vacation. I'm pissed I can't afford ABA for my nonverbal child. I can't even fill my son's ADHD medication because it's back ordered for two months. My insurance will only cover generics and the brand name is almost $500 a month. Christ I'm pissed.
Parenting is always a challenge. Our system has made parenting almost impossible for parents of ND kids. I really think we need to band together and push through some changes to the ada to better protect our children. I really think we all need to get angry together. This is impossible. I read posts every day with parents who have it 10x worse than I do... And posts we're parents have it easier. The thing is we are all struggling. Our mental health is crap, our careers are in the dumpster... And if our kids don't get the help they need their lives are doomed. I am angry... But not at NT parents in general. I'm angry that it feels like the system is setup to make my children fail., I feel when I complain about my nd kid to my people they compare my kid who looks ok on the outside and like they think I just make shit up or that I’m just not providing enough opportunities for her to do things herself like I’m super sheltering her. They don’t see the meltdowns we have because she was asked to eat noodle soup last night ( the noodles were broken apart in the soup). She’s 13 and she can’t handle it. We already strain everything but the chicken. And if the chicken has a slight color to it or a tiny piece of fat go fuck yourself. It’s always been like this and this is just one tiny area that she struggles.
I don’t have a kid that has as many needs as yours does but I get it. And man, I’ve got to take my hat off to you. Your family is like the Incredibles. You are badasses doing so much for that child. That kid is so freakin lucky to have you. I’m sorry it’s so hard. I’m sorry people would rather judge than help or understand. It is super frustrating to hear people cry essentially about having to actually guide and parent their kids. My kid won’t automatically do what I want. Wahhhh. Duh. I really believe we are in the PhD and Masters levels of parenting here when most people stop at jr. high level. I don’t think you’re doomed. I think you need to find your tribe whatever they look like. You need people who will take what you say at face value. Do you have an autism society near you?, It sounds like you need to find support for yourself regarding the high level of support your child will need forever. Care for the caregiver is a real need! Come to terms with your situation, accept it, make the best of it and love your kid, so it doesn’t isolate you from people who seem to care about you and want you in their lives. Stop torturing yourself in neurotypical parenting spaces they have nothing to offer you., I feel the same way. I don’t want to be around other people and their kids at all. It just makes the gaping chasm more obvious and heart wrenching for me. I’d rather just go it alone., Virtual hug 🤗 This isn’t advice per se but just compassion from an Internet stranger. You are NOT a horrible person (by virtue of the fact you’re asking this question - you obviously DO care). You ARE a person who’s been dealt a VERY difficult hand who is having (in my view) a totally understandable reaction to that. Please be nice to yourself. You deserve it. Really.
(I’ll insert a little story here too, it might make you feel better??? Background: My daughter is high functioning - I hate that phrase but cannot come up with a better way to describe her flavor of ASD. Still I cannot take her shopping for clothes otherwise she will MELTDOWN. She will only wear very particular clothes. There’s something about her feet that I don’t understand that means she can only wear VERY SPECIFIC shoes. I left my daughter at home to go do some back to school shopping with my friend who has a daughter who’s a year older than mine. They spent SOOOOOOooo long looking at all the cute dresses and outfits and shoes. I was desperately looking for a pair of shoes ANY pair of shoes my daughter could wear to school. I just left my friend in the store. When he came out and angrily confronted me about just leaving them there I just LIT INTO home about didn’t he realize that I wanted to go shopping for cute school outfits for my daughter and I wanted her just to be able to wear SOMETHING without it having to be a huge ordeal. Now this is a cakewalk compared to what you’re doing with your family. My point here is that your feelings are VALID. Find safe ppl you can share them with (which I guess you’re doing here, right?). Maybe tell your BFF about it; she IS your BFF, yes? She should be able to handle hearing uncomfortable things.Please be kind to yourself. You’re doing a LOT and don’t need any more pain than what you’ve already got., I’ve totally experienced rage like this. It just makes you human. Therapy helps. Sometimes if the feelings are too vile to say to someone else I just say them to myself …out loud., I feel this 100%. I go through this cycle of anger and self pity all the time. One thing I try to remember is that as difficult and heartbreaking as raising my autistic daughter is, there’s millions of parents who would switch places with me in a nanosecond. It doesn’t always help. But sometimes it does., We are in the same boat as you so I understand how you feel and sometimes I feel the same way too. One thing that I think really keeps me having a sense of perspective is realizing that some parents have it even harder than we do.
When my daughter was 8 months old she was put in an early intervention program with some kids who needed WAY WAY more support than she did. To the point i actually felt bad being in the program. Like one of these kids can't even control his muscles or feed himself. He will never do more than lie on the floor or lie in his chair and be fed. He will never be verbal or anything like that. These poor parents have it SO much harder than I have it.
We just take for granted the things that are easy for us without thinking about the people that don't have it. Like you might complain to your friends about how hard running a marathon is, but you're not thinking about all the people who can't walk at all who would probably feel shitty if they heard you saying that.
We just need to keep things in perspective and focus on what we DO have., Yes, I absolutely understand and feel this. This is why I've learned to keep things to myself. I don't join in the kid discussions at work, and whenever someone asks about mine, I just say he's good., Honestly my daughter is barely going to be 2 and I have these same feelings sometimes, even with my own sister. I try hard not to but sometimes you can’t help what you feel. I never take it out on her/anyone else, but it does get to me sometimes. I hear advice from people sometimes that I know won’t work with my daughter and want to literally scream at them! It’s hard not to feel that way sometimes and I can’t even imagine what you may be feeling because my daughter is “easy” compared to a lot of autistic children. So many people tell me “I’m so lucky” cause she’s so quiet and to herself, but I want to scream I’d rather have her talk my ear off than to only have 1 word altogether at almost 2. It sucks and I’m sorry, but if it’s any solace your feelings are completely valid and I pray you find some peace sometime soon!🙏🏻🙏🏻, You’re not a horrible person. It’s very difficult to cope with your stress and constant go go go life. No time to rest and enjoy. You’re not a horrible person. I don’t know how to help you with these feelings but I think it’s normal to feel jealousy and what could’ve been feelings., , That’s super understandable. Don’t beat yourself up about it! My kid is low needs autistic - if we were friends and I complained about my struggles then you’d probably feel rage 😂. I think I would too. I sometimes feel rage when people complain about having to pay for piano lessons for their neurotypical kids age 5 haha and I’m like pleeeeease. We are all in our own little bubbles and not considerate enough of other people in more difficult or challenging circumstances. This group has been very sobering for me because there are lots of amazing parents with gorgeous but extremely challenging kids. I’m basically living in a world surrounded by middle class ppl with neurotypical kids so I do feel sorry for myself (even though my life is not that hard) - my fix (although my circumstances are less challenging so props to you) is to find some mates going through the same thing! Easier said than done of course! Feel free to pm me if you’d like to vent though!, I think it’s completely valid. I feel the same sometimes. Like your life is obviously WORK and you are doing the most and making the best and appreciating the little you have and it’s like other people can’t fucking enjoy the little things., Does your family know how you feel about being invited? They might be inviting you to show that you're important to them and not left out because they don't want you there - which is backfiring, of course, but they can't know that unless you tell them.
In general, this just sounds like you're overwhelmed and jealous of others who have it easier - many people feel like that at some point and don't turn out to be horrible people who don't care about anyone. Hell, I used to get angry at people for being happy when my depression was really low - not healthy, but also something I got over with some help.
The main thing that helps jealousy is getting more content with your own life. That can be really difficult, but there's a few things that might help. You might have access to respite services through the government, supervision by the school (for example as part of an early start program) or be able to get a break in some other way. Find things you do just for yourself - they can be small, like making a cup of tea or reading a page of a book you enjoy, and that's fine. But having some way of keeping an identity beyond "your sons parent" can have a huge impact on mental health.
What do you like about your son? Why do you fight for him? What does he enjoy? Writing that down somewhere might help you remember what you're fighting for on the bad days.
You might want to consider your use of social media as well - for example, if reading about typically developing children is hard right now. Taking a break from social media, muting or blocking subreddits or people with content that isn't good for you, can really help., It's hard enough walking the lonely path of taking care of a ND kid and especially with a genetic disorder (so sorry for your struggles). Comparison is an absolute thief of joy so it's best not to dwell on such thoughts because as you said, everyone's problem is valid within their own sphere and that's the reality of life. (Ask the Palestinians about their daily struggle and your realize our problems are really first world problems). Anyways, celebrate each small victory, surround yourself with those that are empathetic to YOUR struggles and find your place to vent and not become a negative person dwelling on just the problems. It's hard, but it's our choice to feel how we feel (smiles and cries) because in the end, that's all we have and nobody can take it away from us. Good luck., Everyone’s life is different, everyone’s threshold to deal with their emotions is also different. In my belief, every soul is at a different stage of maturity and ascension. Don’t fall on the trap of judging others even tho you clearly have an extremely hard situation. Not because others don’t deserve the judgement, but because you don’t need the low vibrational energy that these feelings will bring you. You need strength, positivity, compassion and patience! Don’t expose yourself to people/information that fuels those feelings. If you need to cut relationships, do it! You need people around you that can relate. Build your own village. By the end of the day, everyone is building their own unique story, and is valid to feel overwhelmed even when you have a good life., I think your feelings are very valid. Your situation is difficult and overwhelming. It also seems that you are still grieving a normal parenthood, which is a very difficult process., I also get unreasonably angry when family asks if we want to do things that are 1000% not doable for us. They should know. It makes it feel like they don’t care or pay attention to what’s going on. However I also know they don’t want us to feel excluded, they are sad we can’t take part in things too.
As for other people I think what helped me to not have that anger for other people is I stopped expecting my child to make progress. Instead we celebrate any progress as a huge win and expect him to kind of just maintain where he is at. We don’t overly push or fight for little progress. It has made us all so much happier. He is almost 9 now and making that change has made all the difference., You're not a horrible person. It's incredibly normal to lose access to empathy when you're under tremendous stress. Layering guilt and shame on top of it is only adding to your stress load. The fact that you feel shame for feeling rage is evidence that you are a good person who is kind and wants to relate to their friends and family. Your life circumstances are making it really hard to relate to others. It's really normal and not your fault.
Are you working through processing your grief over the life you were expecting for yourself and your family? I think unprocessed grief is very likely at the root of the rage. It might be helpful to keep in mind when you're feeling this way that it isn't about other people sharing their struggles, but about the fact that you wish you also only had that level of difficulty to deal with., Everything you feel is valid and something we have all felt(are feeling) at one time or another in different degrees. So no you are not doomed to be a bad person.
In the beginning I used to feel angry too about our circumstances. The question of why really messed with me for a long time. Why her, why me, why us? Until one day I realized why not her, why not me and why not us. There are soooo many good and bad things that are in this world and they have got to happen to someone. There is love, friendship, laughter and bliss and then there is murder, accidents, rape and so much more. Just because I think I have been a good person doesn’t make me exempt from bad things. Autism exists and someone has to be autistic. So why not her?
Anyways you are right. Our struggles are soooo much harder than those NT kids struggle and I say that because I actually have a NT daughter too. Things are just so easy with her. Her struggles are something we WILL overcome but I am not sure about my autistic daughter’s struggles. Will we overcome those? I don’t know.
You obviously can’t lash out at people when they say oh my NT kid won’t eat this or that. All you can say is yes that sounds bad, but it will be fine soon enough. That’s what I do. That’s what I have to do because otherwise I would be alone. No one wants to be with someone who is always saying I have it worse like it’s a contest, do you get what I mean? Sometimes I stay quiet because I know they don’t want answers they just want to vent.
I think as much as I am grateful for all the resources we have for our kids there is a real lack for us parents. There is no support for us mentally or emotionally. No one goes on the parenting journey hoping to be a special needs parent and when it happens your world shatters yet there is no support. No one to talk to about how you feel all these valid feelings. No one to answer your questions. There is nothing and no one except forums like this. And I wish that would change., I can relate too. I am from a Big family, we had 5 births over the same year (between my cousins, brother, etc...) All of the children are the same age with just a few months in between. My niece is just 3 months younger than my autistic non verbal 4 years old son and I LOVE her. I LOVE all my nephews BUT...when I see them becoming their own persons, talking, laughing, Playing together, going to futbol games (soccer for americans lol!) I do feel envy. I do feel resentment. Many times I've cried and wonder why, why me out of all of them. Why my son! I do not wish any of them to go through what I am but fuck It, sometimes I want to Scream at them when they complain about something. I wish my kid wouldn't stop talking. I wish I had to juggle so many birthday parties and sleepovers and futbol practice. Instead of always having one way conversations with my kid about school, or running from one therapy to another. They all adore my son and his cousins are very protective of him but they are little and when he doesn't show interest in their games, eventually they stop trying, which I do understand but It saddens me. And some of my family members do not show the same LOVE for my son than for others (aka being the only one with no Christmas presents, or just being invited over activities) They do not have the same Bond and I would like to ask why, why, but you cannot force someone to feel something they don't.
I just try to Focus on my little one's achievements and in the people that are always there for us. I do believe we Will always get what we deserve., I also have a son who is autistic and we found out in January that he has a very rare genetic mutation that is causing his epilepsy and motor challenges. I feel your frustration and jealousy with parents of neurotypical and non disabled children. It truly is something you don’t understand until you live it every day.
Prior to my son’s rare mutation diagnosis, I grieved his inability to play sports, his limited verbal communication, how he needs help with every aspect of life. Now I just don’t want him to regress or have neurodegeneration. The jealousy and longing for him to typically develop has been replaced with a drive and somedays hope that he can live a better life than we ever imagined for him. I know it may not work how I think it will, but gene therapy, especially gene editing, would change his life. He’d still be autistic and likely have significant challenges, but the seizures would stop, motor planning would improve, he’d likely be able to learn daily living skills, etc. This is still years away, but the technology exists and a cure for rare diseases caused by gene mutations is on the horizon. Maybe your child will benefit one day and be able to live a better life., I think it's pretty typical. You probably have more empathy for some other people than you had before so it all equals out. , Yeah I don’t care about anyone’s problems with NT children. Their lives are better than mine. I know it’s a rude selfish and horrible way to think but that’s where I am., I definitely understand. I have 4 kids, the 2 oldest are diagnosed (4 and 3 yr olds) that are nonverbal and the older has severe adhd, and both are defiant. So they eat the same foods, sometimes freak out about the food we give them even if it’s what they normally eat, rarely like the same food if it’s from different restaurants, won’t come to you when it’s time to change a diaper but will acknowledge that you are calling their name 5 feet away from them, can’t understand when it’s time to clean up toys, and things like that. Most of the hardships are really just not having the ability to communicate or know that they are actually understanding what we are saying. When I hear my wife’s friend (or anyone really) say that their NT children refuses to do something like eating, bathing, or clean up toys, and they aren’t sure how to make them, it drives me insane. They understand what you are saying and are just telling you no, do something about it. My kids just look at me like I’m crazy and continue doing whatever they were doing and idk if they think I’m speaking a foreign language or not, because they don’t speak at all. I’ve started noticing resentment for people like that and get a sort of depression when I see kids younger than mine speaking so well. like people are just taking it for granted, although I know they aren’t. I’m trying to better myself though, I’ve found myself comparing myself to parents of kids at the park and actually I feel rage towards the NT little kids sometimes when they’re jerks and their parents just put their head in the sand because they can and yes I’ve been jealous of that to an extent. But be careful with this victim mentality. Yes you have it hard and many people cannot really understand. But it will make your life miserable if you develop this thought pattern and never let it go. You have to find gratitude in something to be a happy person. You might need to find a way to step away from your child with respite or something and develop another area of your life to find gratitude in. Or maybe you can do it together through advocacy. I don’t have the answers and I don’t know your life. But life without gratitude is going to be miserable for you., Eh. I don't have any empathy for them, either. That said, I think this is really normal especially in the early years. As the years have gone by I am less resentful. But, I have accepted I will always have these feelings, at least from time to time.
What's that quote... Things are neither good nor bad, but thinking makes it so?
Feelings are just feelings. , Relate so hard to this. 9 year old severely non verbal not potty trained daughter. My brother asked us to come for Easter. Uhmmmmm I have to lock my doors from inside and outside. She almost made it to the interstate once. He has no idea. Most people don't. She eats 5 foods and doesn't use utensils., I am sorry for your pain and struggles, and can absolutely relate to most of what you said.
My son is nonverbal, dd with severe autism and extreme sensory issues. He regurgitates on purpose, spits, bites, scratches and destroys whatever is in the room.
Basically he’s a 5-year-old, but functions like an 18-month old.
I have SO much resentment towards parents of typical kids, ESPECIALLY ones that ignore them. But I also have some good friends with regular children and know that it’s not fair, but we’re doing the best we can!, I'm so sorry, OP, and nothing but empathy over here. My youngest is 8, minimally verbal, and not potty-trained. Day to day I manage things just fine, and accept his development is his and cheer his progress, however small it might be. But every once in a while I have moments of sadness and bitterness. I have a number of friends with children born within six months of him. Seeing their posts on social media of all of their children's accomplishments is really, really hard at times. I'm waiting for my child to say "mama" and they're bragging about their genius kid who's learning to multiply and talks their ear off. It SUCKS. And to add that, my oldest child was diagnosed with T1D last year, so now we get to manage his health needs and worries on top of my youngest's autism.
My biggest challenge in life is grieving the parenting experience I don't get to have.
Big hugs to you., I can definitely relate. My 5 month old daughter was recently diagnosed with a rare genetic condition that carries a high likelihood of cognitive and physical delays and/or disabilities and a 50% chance of ASD (hence my presence in this group), along with a host of serious health problems. I can’t predict how the disease will manifest in my child, but she currently has infantile spasms, several non-malignant tumors in her brain (causing the spasms), and one in her heart. She might never walk, talk, eat without a gtube, etc. And I just about lost my mind the other day when the mother of a NT baby in my parenting discord group was mourning her child’s recent diagnosis…of a cashew allergy. That she was grieving the easy, joyful eating experience she’d imagined and hoped for, and was so sad that her child would have a more difficult life as a result of this CASHEW ALLERGY.
It took everything I had to not respond with a snarky comment about how I’d had a very similar reaction when I received my daughter’s rare disease diagnosis., I have no advice but I feel the exact same way. I always feel the most rage towards parenting “experts” giving their gentle parenting advice, like oh, have you tried talking to your child about their feelings? Ma’am… do you not realize some children do not talk?!, I totally get this. It doesn't make you a bad person.
I tend to laugh it off, everyone is on their own journey and you and your family are absolute superheroes. Those who know, know. You're doing an amazing job., You’re feelings are valid because no one knows your struggle. I sometimes feel the same way when I see parents of NT toddlers complaining about things our kiddoes may never do. Even with the challenges I’m facing with my autistic son, I still feel lucky that he at least can go to school even though he’s not talking., So I have to constantly remind myself that everyone faces different trials at different points in their lives. We don't walk the same journey. Yes, their cluelessness is f-ing infuriating.
But. My son is never going to get a 16 year old girl pregnant. My son isn't going through cancer treatment. His parents are relatively healthy. I'm never going to get a call from the police that he's arrested for doing drugs, or setting something on fire down town.
I get it. I do. I also don't think parents of special needs children get nearly enough grace, support or understanding. But perspective is a lot. I have to constantly try and remind myself, we're at different seasons in life and we will all struggle. This may not even be the most challenging time in my life. I'm not sure I can handle that, but it is what it is. This is the life card we have. Keep trying. You're not alone., I feel this all the time. My sister was getting worried that her 9 month old wasn’t talking yet and only said “hi”. I told her I would cut my arm off for my 2 year old to say hi to me.
My brother complained that his kids always annoy him to play with them. I told him I cry all the time about how my son doesn’t play with me ever.
Honestly, I think it helps them. Some perspective maybe. I don’t say it in a mean way, but…ugh makes me so mad.
Someone did it to me too! I posted an Instagram story about wanting to meet other autism parents and how I was struggling and a friend of a friend messaged me some advice and mentioned how she wishes she was in my shoes and listed off a lot of things she’s dealing with when it comes to her child. Perspective., No advice here either but I feel you!
I had a friend try to tell me recently that her NT son is worse than dealing with my 3 year old ASD/ADHD daughter. She then went on to describe his behaviours and compared them to my daughters. Which made me make an excuse to get off the phone before I really lost my temper.
The RAGE I felt was indescribable. And I started thinking things like “you must just be a bad parent” and “you have just raised a little brat”. I know these things are not right to think about as I do know everyone’s circumstances are different.
But I’d be lying if I said that I don’t feel jealous of NT children’s parents at times. And that can also make me lack empathy towards them., I mean yes. It's so hard. I hear parents of NT kiddos complain about the most mundane things and I think about how nice those problems sound compared to mine. I don't have a great answer other than to continue getting support and being a baller parent., Just a thought, but maybe stop focusing on other people’s lives. Don’t mean to say that rudely, it’s really just that simple. I have too much going on in my own life to concern myself with other people’s problems. I’m not trying to relate my life to theirs, nor am I interested in who’s problems are harder to deal with bc no matter how hard you think your life is, there some poor parent in some poor country that doesn’t have one-tenth the resources you do that’s trying to make it through each day. Just be happy about what you do have and focus on your own family. That’s about the easiest way to think about it., My only friend I have that lives anywhere near me lives about an hour away. She called and asked the other day if she cooked everything the night before would I be willing to pack up the family to go over for Easter. And I just told her “no” straight up. When she asked why kind of sad like I told her it’s just too hard. That they are invited to come to my house but it’s just too much to pack up my son and drive that far for him to not have a good time and freak out and scream and fight the whole time till we go home. Just isn’t worth it for me anymore., You’re not a bad person for feeling this way but it’s what you do with those feelings that could be the difference.
Venting on a page for parents is the best thing for you just make sure it doesn’t seep out anywhere else. I know it’s extremely difficult to feel like no one in your real life gets it, being a grandparent of a special needs kid is way different than a parent, so even those close that are helping don’t really get how you truly feel.
The only reason I say this is the autistic adult community hates when parents complain and can be so tough on parents and it sucks. I was so lost in the beginning because it was like there is no middle ground and a lot of the communities I was looking into were hating each other. The autistic adults hated the moms of autistic children and the moms of autistic children weren’t listening to the actual lived experiences. I was able to find a few spaces like here but I advise an abundance of caution.
Everything you say and feel makes so much sense and you have every right to feel the way you do. You are not alone in these feelings.
I am glad you are in therapy, I am sure a lot of us are. My therapist says it’s okay to mourn who you thought your child would be and how you thought life would go. It really helps to able to talk about it and say the uncomfortable things.
I would maybe have a conversation with my family though, and I have with my own in laws. I set realistic expectations of them and what they think of my kids and I let them know. when my mil says “ I was always able to do this or that with no issue” I said “ oh really please tell me more about how your seeming NT kids went to bed for you reasonably.” “It’s not helpful to offer advice when your kids have no issues” I don’t think it would be a bad idea for you to relay that to your family. I have told my in laws don’t get your hopes up for what you expect his life to be like. I would definitely tell your sister it’s hard for you to hear her complain as your sister she should show more tact and maybe she doesn’t know that it bothers you but once she does it may keep her from being so flippant.
I know they say comparison is a thief of joy so I tailored my instagram to mostly neurodivergent accounts and I mute people on facebook if I haven’t deleted them all together. My tik tok is like that as well. It’s mostly nd accounts it helps me feel like I am not alone. It’s hard to find people in real life who get it., All of these feelings are completely valid. I will often feel the same way. Especially when someone gives NT parenting advice.
You’re doing great. Keep going., It's not just you. Sigh. :-(, Nothing to add, just that I relate and thank you for voicing it ❤️, This is really good advice that I think I had forgotten. Thank you., I deleted Facebook too. It helped. I hated seeing videos of other kids milestones., High five to you knowing you’re a badass! 🫶🙌, love this mindset., Yep I’ve cried over people saying this., I get this. I have friends who complain their children are in the 'why' phase, and non stop asking questions. It's so hard to not get in my car and tear up as I would love to have my son ask me 'why' questions..., Same. My husbands friend calls and complains about his kid saying “I hate you” and we’re both like “I would kill for my daughter to say that, just as long as it meant she was saying SOMETHING.”, Yes! Had a friend complain to me that her NT child same age as mine wouldn’t stop talking on the way to my sons birthday (at the time he was non verbal and all we heard him say was mom ) I remember feeling rage at that! You are not alone., So feel free to ignore this if it’s not helpful, but I have a bit of a diff perspective to share.
My youngest is pre verbal, and my oldest is an obsessive talker. Both are hard in different ways. The nonverbal kid is challenging in obvious ways. My oldest though went though a phase of asking questions nonstop and being stuck in these endless loop of hypothetical events (what would happen if we can’t make it somewhere in time? Well what if we can’t reschedule? What if we can’t go somewhere else?). On and on and on. It’s so draining. Even now he’ll do this whole “stream of consciousness” thing, and ifs so hard to redirect him. Important to note that he’s also autistic.
I used to think it was so ironic that I had one child who didn’t talk, and one who talked too much. Even now that my youngest talks more, the oldest is still more challenging at times. Just my 2 cents., I feel like the comparison thing is because it’s how we look to connect by common ground. Being a parent of a kid who is different from the average kid is isolating in ways and there is valid grief around that. I know for me that is where my anger or depression (anger turned inward) come from. I can work to find people though when I have energy. I hope you and your daughter are doing ok in the hospital. I’m sorry you’re having to spend time there. It’s not usually a place people want to be., 100% having a close friend to vent to is the only way. I have a couple close disability mom friends who I do this with from time to time., Yup! Therapy is great for this, This is me too. I’ve got a mom friend that gets it, and I can say anything without judgement and she’ll meet me right there where I’m at. Usually once I get it out of my system then I can work on shifting how I see things, Agreed. It’s not that I want to have it the worst but I am looking for validation from others at how difficult my life is. It’s so counter productive and a real waste of time and energy., Yep, I always referred to it as self-victimization. It just creates a negative spiral; my child also has a rare genetic condition + Autism + ADHD and teaching him not to victimize himself as he grows up will be one of the most important things I do., That stood out to me too. It also isn't great in spaces like this where there are parents of relatively lower support autistic kids who have done all the things/hit all the milestones OP resents with NT kids and their parents. I've seen multiple instances of parents of kids with lower support needs say it essentially intimidates them into not posting/commenting as much as they'd like. We need to do better at holding space for the whole spectrum., That makes so much sense and I’m so sorry you went through that. I can totally see how that would be extremely difficult., Ooh this is such a good way of thinking., This is really good advice and a point I hadn’t considered. Thank you, you’re right I don’t want them to stop sharing. Also yeah, my husband has seen the rage and I’ve had a few tearful heart to hearts about it with my close friends but typically I’m able to conceal it., It’s infuriating I think because you’re asking for validation/understanding when you vent & them trying to give advice that you KNOW won’t help (because you’ve exhausted every option & that’s why you need to vent) or reassurance that things will just change one day, when that isn’t clear, feels like the exact opposite & it kind of is, it’s like them saying “I do not understand, & therefore I can’t validate how hard it is” but they actually think they’re saying the opposite, which is incredibly infuriating lol., Oh I feel this....My sister will say her child has meltdowns too. Oh trust me it's not the same., “Can’t you just reason with them?” Sends me into a rage every time! lol, See! Yes, while maybe your situation is “easier” than mine your problems are still valid snd your situation is still challenging. You should be able to share your struggles. Logically I know this, I’m just doing a bad job putting that logic into practice., Thanks for commenting. Yes, my family / friends know it’s triggering to ask but they are asking bc they genuinely want us to come and will help is make it happen if we want. My state is trash for waiver programs and assistance. We’re on the waitlist for respite care but it’s 8 years long lol.
I am extremely lucky and grateful to have parents and in laws who basically require me to take time for myself or with my husband. My parents don’t live close to me but my in laws do and they help out a lot., I started following more autism / special needs accounts on insta And it’s been so helpful in feeling supported my perspective., Me too, I understand. My kid said “yucky” when she didn’t want a hug the other day and I was so pleased. I hope you get to experience your child insulting you someday :), We all need validation. All of us. I hope you’re feeling some of it here today. I may not know you but I hear how hard you work. I hear how much you would like people to get it and connect with you. That’s what I hear through my filter. I also hear how hard it is. I just remembered that when I’m in places where I just want others to see what I’m going through sometimes I’M not seeing it. Like hey take care of yourself the, hickgorilla. Oh right. I haven’t actually taken care of myself in how long? How can I do that? Is there anything even small I can do today? Can I get myself a beverage I’ve been not getting because no good reason? Is there something that smells good that would lift my spirits and make me feel more like me?, I don’t have any social media aside from Reddit (this community) bc I’ll be honest I can’t stand seeing posts from people who don’t appreciate how good they have it or the posts where I’m seeing their kids hit such awesome milestones and here we are wondering if our children will ever be able to function in society or go to school. Hell, I can’t stand talking to my own mother bc she complains how when she woke up at 11am that she didn’t get enough sleep.
Wouldn’t you love to be that mom that could roll outta bed when it’s almost time to leave for school in the morning and just throw your hair up in a bun, throw a hoodie on, and then grab a coffee after dropping the kids off? Yeah, me too. My son is five and still in diapers and can’t talk. It takes at least an hour to prepare him to go somewhere and by the time we are done with therapies I’m drenched in sweat from having to practically carry him out of the school. I’m his caregiver and can’t work aside from my small business that I barely have time for. I can’t go grocery shopping or do any shopping with him, it’s impossible. I haven’t eaten a hot meal in many years. Don’t even know what it’s like to go to a restaurant anymore. I haven’t had a day with quiet in like ten years. But, then you hear people complain about their kid whining for 3 minutes and that they can’t stand it… try listening to a child scream for 8 hours straight. Am I right?
That’s why I find myself on this sub a lot bc these are the only people that understand me. Don’t feel bad OP, seriously. We all feel this way a lot and we get it., For what it’s worth, I don’t think you want to have it the worst. I think you’re seeing and hearing and realizing over and over again just how unfair life is, and that’s a crappy thing to have to confront ever.single.day. It sucks, and if’s okay to feel this way. It’s also good that you’re aware of how you’re feeling towards others so you can keep the resentment in check/not lash out unexpectedly—doesn’t sound like you would, but I totally understand wanting to scream at the next person who complains about something seemingly minor. :)
And that’s the thing: it seems minor to you but may be major for them. People who don’t have ND kids truly don’t understand what it’s like. Someone who I like and who meant well recently asked me if I’ve tried establishing boundaries with my ND daughter (then went on to demonstrate how boundaries work with her kid). IF ONLY I’D THOUGHT OF THAT!
I think parents of ND/high needs children can definitely relate to how you’re feeling—you’re not alone!, Do you have a mom's group or friends who can relate? We all what to feel like we are not alone. Maybe you just need someone to vent to that will understand because they are in a similar situation., We are all hulk when the kids go to bed over here Dm me if you ever want to chat. This life can be a bitch. But we also have Reddit to bitch about it in secret haha it’s our covert little society, It feels like you’re doing a pretty good job at being empathetic though… your comment made me smile 😊… maybe it’s okay to feel rage sometimes 😂 Also…you’re taking amazing care of your kid… you don’t also have to be a saint. Can you get a break at all? Where are you based?, Thank you! Never something I thought I’d wish for 😜
|
Learning social cues and hidden intent
|
I'm looking for advice or suggestions for books on the subjects to read with my almost 9 year old AuDHD son. He struggles with social cues, the one we notice most is when people are bored or want to stop that topic (he can go on and on about Minecraft forever 🥴) he doesn't notice until people are being exaggerated with it like sighing or rolling eyes. He also doesn't see how people may say or do something that isn't for the reason that it would initially seem, like being nice to get someone to do something you want or subtle meanness. He also doesn't understand how the way says things maybe understood differently than intended and could hurt someones feelings. We're just starting to navigate autism and I feel like I really don't know much about it yet so any advice on these things is greatly appreciated.
|
The author Michelle Garcia Winner has books for all ages on Social Thinking. I'd see if you can get anything by her from the library, and see if it resonates. I know she has books for teens and tweens, in addition to toddlers through adults.
We use her Social Detective book and the Superflex framework with our 4 y/o. My husband really loves her book *Social Thinking in the Workplace* and feels like it should be required reading for engineering managers., Check out the learn2donow YouTube channel. They have a lot for autism and you can easily reach out to the people who make the videos for more help.
Smita has helped a lot with teaching me about autism & adhd.
Hope this helps!, I'm going to suggest my kid take a look at that last one. A couple of therapists have tried the general books designed for the older ages and my kid still found them "too rudimentary and babyish"., Thanks. I'll look into them., Thanks! I'll definitely check it out. I have ADHD too so I get that part well but I really feel like I'm struggling to fully grasp autism. Right now I'm just trying to figure out how best to bridge those gaps and make his life a little easier in the long run., I haven't read the Michelle Garcia Winner books for teens myself (my husband is the one that has done the deep dive into autism support literature), but I'd give them a look, too, esp if you can find a free or cheap copy like at a library.
I know that one of the topics that she covers is that social norms drastically change during puberty -- which can be really frustrating if you "mastered the rules" as a kid. For example, pre-puberty, the social expectation is to apologize with your words. As you get older, you are also expected to *examine and change your behavior* in addition to a spoken apology., I understand that my mom did everything she could to help me growing up. Meeting with school teachers, reading books and doing research for me. I’d say familiarize yourself with doctors and therapists in the area and get a support team going. He’s extremely lucky to have a mom willing to help out and support him. I’m not giving any opinions on parenting or your son but I just want you to know you are doing a good job and he appreciates it even if it doesn’t feel like it sometimes. Neurodivergent kids have a hard time with that sometimes., Thank you. We move every few years so searching for great doctors isn't always worth it but thankfully he doesn't need much support, just a little extra guidance at times and he's a very resilient kid so I'm not too worried. I just try to also do the best I can for my kids mental health as well and I know learning these things from me will be a lot gentler than to eventually start hearing it in less tactful ways from other kids., A life coach helped me a lot. I do telehealth.
I work on the videos for the learn2donow channel so I can post some content about helping kids from a parents POV after I do some research.
|
Learning to ride a bike
|
Son is 8 and never learned to ride a bike. His old one is now too small and I want to buy him a new one and wondering if anyone had input on good bikes. I read about the trek and guardian bikes. They are supposed to be better for autistic kids. But they are pricey. Just wondering if they’re worth it. Thanks!
|
I kind of fell down the bike rabbit hole when trying to get my son to learn to ride. I've taught like... 5 kids to ride 2 wheelers and it wasn't a problem, really. Several weeks and they got it. With my son, he just couldn't do it. It wasn't happening and he'd get so upset. He couldn't pick up the bike, he couldn't balance, he couldn't steer, he couldn't pedal... Just a mess.
After doing my own research and spending the money one "high-end" bikes I'm a firm believer that they are worth it, yes.
My son learned late on a balance bike, which I'm a huge advocate for. At 5 we got him a Prevelo Alpha 2 bike (or was it a 3?), which, yeah, was expensive. I went with them over Trek/Guardian because they were lighter. We were able to take the pedals off, he used it as a balance bike for 1 weekend and was pedaling on his own within 5 minutes when we put them back on. Once we got him the Prevelo, he actually learned faster than any of the kids I've taught. Which was surprising.
We loved Prevelo SO much. When he outgrew that, we were able to sell it for over half of what we paid and purchased a larger Prevelo Alpha 4 bike.
I will tell you all of the kids that have used his bike absolutely LOVE it. It's SO much lighter then standard kids bikes. He was able to lift it into the back of the SUV himself, even at 6, and my kid has no muscle mass, lol. It rides like a dream.
He is technically too big for this one but he only rides it a few times a year so we aren't really thinking of upgrading it right now. I wish he rode it more. Maybe in the summer.
I would recommend reading at [twowheelingtots.com](https://twowheelingtots.com) prior to purchasing a bike. They really help you with sizing and making sure you're getting what your kids need., We have a Trek, and it's a great quality bike, but I really don't think one brand of bike is going to help someone learn to ride a bike better than a different brand of bike. The geometry of balance bikes can be different among brands, so some will be a more natural biking position. The great thing about buying a Trek is that they have a trade-in program. When the child outgrows the smaller bike, you trade it in on the bigger bike, and half of the purchase price of the smaller bike is applied towards the bigger bike. Most bike shops have similar programs, whereas department stores generally do not., My son is 8 and I have one of the bigger rei bikes that came with training wheels. He has no interest if I take the pedals and training wheels off to use as a balance bike. They also sell a handle on amazon you can attach to the bike and guide them.
A company called workman makes trikes for kids and young adults but I have no idea of quality. I'm also looking into one of the special needs bicycle trailers by wike for larger kids so we can still enjoy the outdoors together.
I plan to keep working on it. Part of the problem is finding a flat area with no traffic. I might try some of the local ball diamonds that are fenced in.
keep workin on it, I kind of fell down the bike rabbit hole when trying to get my son to learn to ride. I've taught like... 5 kids to ride 2 wheelers and it wasn't a problem, really. Several weeks and they got it. With my son, he just couldn't do it. It wasn't happening and he'd get so upset. He couldn't pick up the bike, he couldn't balance, he couldn't steer, he couldn't pedal... Just a mess.
After doing my own research and spending the money one "high-end" bikes I'm a firm believer that they are worth it, yes.
My son learned late on a balance bike, which I'm a huge advocate for. At 5 we got him a Prevelo Alpha 2 bike (or was it a 3?), which, yeah, was expensive. I went with them over Trek/Guardian because they were lighter. We were able to take the pedals off, he used it as a balance bike for 1 weekend and was pedaling on his own within 5 minutes when we put them back on. Once we got him the Prevelo, he actually learned faster than any of the kids I've taught. Which was surprising.
We loved Prevelo SO much. When he outgrew that, we were able to sell it for over half of what we paid and purchased a larger Prevelo Alpha 4 bike.
I will tell you all of the kids that have used his bike absolutely LOVE it. It's SO much lighter then standard kids bikes. He was able to lift it into the back of the SUV himself, even at 6, and my kid has no muscle mass, lol. It rides like a dream.
He is technically too big for this one but he only rides it a few times a year so we aren't really thinking of upgrading it right now. I wish he rode it more. Maybe in the summer.
I would recommend reading at [twowheelingtots.com](https://twowheelingtots.com) prior to purchasing a bike. They really help you with sizing and making sure you're getting what your kids need., We have a Trek, and it's a great quality bike, but I really don't think one brand of bike is going to help someone learn to ride a bike better than a different brand of bike. The geometry of balance bikes can be different among brands, so some will be a more natural biking position. The great thing about buying a Trek is that they have a trade-in program. When the child outgrows the smaller bike, you trade it in on the bigger bike, and half of the purchase price of the smaller bike is applied towards the bigger bike. Most bike shops have similar programs, whereas department stores generally do not., My son is 8 and I have one of the bigger rei bikes that came with training wheels. He has no interest if I take the pedals and training wheels off to use as a balance bike. They also sell a handle on amazon you can attach to the bike and guide them.
A company called workman makes trikes for kids and young adults but I have no idea of quality. I'm also looking into one of the special needs bicycle trailers by wike for larger kids so we can still enjoy the outdoors together.
I plan to keep working on it. Part of the problem is finding a flat area with no traffic. I might try some of the local ball diamonds that are fenced in.
keep workin on it, I kind of fell down the bike rabbit hole when trying to get my son to learn to ride. I've taught like... 5 kids to ride 2 wheelers and it wasn't a problem, really. Several weeks and they got it. With my son, he just couldn't do it. It wasn't happening and he'd get so upset. He couldn't pick up the bike, he couldn't balance, he couldn't steer, he couldn't pedal... Just a mess.
After doing my own research and spending the money one "high-end" bikes I'm a firm believer that they are worth it, yes.
My son learned late on a balance bike, which I'm a huge advocate for. At 5 we got him a Prevelo Alpha 2 bike (or was it a 3?), which, yeah, was expensive. I went with them over Trek/Guardian because they were lighter. We were able to take the pedals off, he used it as a balance bike for 1 weekend and was pedaling on his own within 5 minutes when we put them back on. Once we got him the Prevelo, he actually learned faster than any of the kids I've taught. Which was surprising.
We loved Prevelo SO much. When he outgrew that, we were able to sell it for over half of what we paid and purchased a larger Prevelo Alpha 4 bike.
I will tell you all of the kids that have used his bike absolutely LOVE it. It's SO much lighter then standard kids bikes. He was able to lift it into the back of the SUV himself, even at 6, and my kid has no muscle mass, lol. It rides like a dream.
He is technically too big for this one but he only rides it a few times a year so we aren't really thinking of upgrading it right now. I wish he rode it more. Maybe in the summer.
I would recommend reading at [twowheelingtots.com](https://twowheelingtots.com) prior to purchasing a bike. They really help you with sizing and making sure you're getting what your kids need., We have a Trek, and it's a great quality bike, but I really don't think one brand of bike is going to help someone learn to ride a bike better than a different brand of bike. The geometry of balance bikes can be different among brands, so some will be a more natural biking position. The great thing about buying a Trek is that they have a trade-in program. When the child outgrows the smaller bike, you trade it in on the bigger bike, and half of the purchase price of the smaller bike is applied towards the bigger bike. Most bike shops have similar programs, whereas department stores generally do not., My son is 8 and I have one of the bigger rei bikes that came with training wheels. He has no interest if I take the pedals and training wheels off to use as a balance bike. They also sell a handle on amazon you can attach to the bike and guide them.
A company called workman makes trikes for kids and young adults but I have no idea of quality. I'm also looking into one of the special needs bicycle trailers by wike for larger kids so we can still enjoy the outdoors together.
I plan to keep working on it. Part of the problem is finding a flat area with no traffic. I might try some of the local ball diamonds that are fenced in.
keep workin on it, I kind of fell down the bike rabbit hole when trying to get my son to learn to ride. I've taught like... 5 kids to ride 2 wheelers and it wasn't a problem, really. Several weeks and they got it. With my son, he just couldn't do it. It wasn't happening and he'd get so upset. He couldn't pick up the bike, he couldn't balance, he couldn't steer, he couldn't pedal... Just a mess.
After doing my own research and spending the money one "high-end" bikes I'm a firm believer that they are worth it, yes.
My son learned late on a balance bike, which I'm a huge advocate for. At 5 we got him a Prevelo Alpha 2 bike (or was it a 3?), which, yeah, was expensive. I went with them over Trek/Guardian because they were lighter. We were able to take the pedals off, he used it as a balance bike for 1 weekend and was pedaling on his own within 5 minutes when we put them back on. Once we got him the Prevelo, he actually learned faster than any of the kids I've taught. Which was surprising.
We loved Prevelo SO much. When he outgrew that, we were able to sell it for over half of what we paid and purchased a larger Prevelo Alpha 4 bike.
I will tell you all of the kids that have used his bike absolutely LOVE it. It's SO much lighter then standard kids bikes. He was able to lift it into the back of the SUV himself, even at 6, and my kid has no muscle mass, lol. It rides like a dream.
He is technically too big for this one but he only rides it a few times a year so we aren't really thinking of upgrading it right now. I wish he rode it more. Maybe in the summer.
I would recommend reading at [twowheelingtots.com](https://twowheelingtots.com) prior to purchasing a bike. They really help you with sizing and making sure you're getting what your kids need., We have a Trek, and it's a great quality bike, but I really don't think one brand of bike is going to help someone learn to ride a bike better than a different brand of bike. The geometry of balance bikes can be different among brands, so some will be a more natural biking position. The great thing about buying a Trek is that they have a trade-in program. When the child outgrows the smaller bike, you trade it in on the bigger bike, and half of the purchase price of the smaller bike is applied towards the bigger bike. Most bike shops have similar programs, whereas department stores generally do not., My son is 8 and I have one of the bigger rei bikes that came with training wheels. He has no interest if I take the pedals and training wheels off to use as a balance bike. They also sell a handle on amazon you can attach to the bike and guide them.
A company called workman makes trikes for kids and young adults but I have no idea of quality. I'm also looking into one of the special needs bicycle trailers by wike for larger kids so we can still enjoy the outdoors together.
I plan to keep working on it. Part of the problem is finding a flat area with no traffic. I might try some of the local ball diamonds that are fenced in.
keep workin on it
|
Leaving toddler for a wedding
|
I’m a bridesmaid in a wedding . My 18m old son was originally invited to the wedding when I was asked to be a bridesmaid when he was 6m old. Today the bride messaged me and said I’m rspving for u and ur husband since I know you’ll be there. I messaged back and said don’t forget my son! She said sorry but the venue is child free . I was shocked because when she told asked me to be a bridesmaid she said she can’t wait for my son to come and we can all party it up. I also recently messaged her saying I was looking for outfits for him to wear to the wedding. He was just diagnosed with asd a week ago and I told her and now all of a sudden he’s not imvited. But anywho maybe I’m overthinking. But the problem is the venue is 2.5 hours away from my house. I have to be there 7am for photos. So I have to leave my house SUPER early in the morning , the wedding doesn’t start until 4pm. I have no idea what time I’ll be home but I don’t plan on staying over night because my son is still breastfed to sleep and heavily relies on me during the night. I have tried once before to go out and I came home at 10pm and could hear him screaming from outside 😭
On the days that I usually work my sister watches him until 530. He’s okay with me being gone for work . It’s just bed time that is a nightmare without me . I’m debating on if I should have my sister come and get a hotel near the venue so we can spend the night or just go home ? I’m scared it will be hard for her to watch him all day in a hotel and he’ll be more comfortable at home but I’m also scared what time I’ll get home if the venue is so far away. Thanks for listening to my rant ! WWYD ? Also I mentioned to the bride he was originally invited when I was asked to be a bridesmaid and she said she doesn’t remember saying that.
|
Skip it. She changed the plan, not you. Is this the first time she has acted selfish?, That is a wedding you should skip, Your priority is your child who relies on you to live. Whatever you need to do to be there for your son, do that.
I know you've probably already heard it all before, but you deserve friends who understand your priorities and respect them., My personal take on child free weddings is that as a mom of small babies, I am only KIND OF invited. It's a very conditional invitation. "if you are comfortable leaving your children for that long, you can find childcare, you are out of the nursing-every-2-hours woods, you can AFFORD childcare, and you want to give up a day/few days with your kids, THEN I'd love you to share our day with us." To me, it's not a real invitation. It isn't inviting me as I am/where I'm at in my life (with a toddler and a baby) - it's inviting a version of me that fits the mould they need me to. And frankly, I just don't appreciate that. So. I have not attended a child free wedding since having children of my own. To me, if you are hosting a child free wedding, you should expect that some parents will not be able to attend. In this situation I'd be especially peeved - you agreed to be in this wedding when your son was welcomed - now the script has changed, you have committed to being a part of the wedding, but the bride no longer wants you at the wedding as you are - but the version of you that suits her for the day. That's gross. I'd be telling her I couldn't come if my son couldn't come. 🤷🏻♀️, I'm sorry but I can't understand how you even consider going to the wedding knowing the bride is ostracizing your kid., If she is a good enough friend for you to be her bridesmaid, she is also a good enough friend for you to have this conversation with her. I would explain exactly how much stress it is causing you, and how you aren't sure of the best way to handle the situation. I would also ask her to check on the venue's policy, since they may allow babies and toddlers. If she is not willing to do any of that, you have your answer about whether it is worth going to any lengths to be in her wedding., Call the venue and inquire about their policy. She’s lying or the timing is just very coincidental. Either way, it’s enough of a coincidence for me to ghost this bitch on her wedding day and go full scorched earth.
Exclude my kid over his diagnosis and lie about it? You may as well tell me to fuck off to my face cause we ain’t friends after that.
Alternatively, if you’re not a defensive crazy person like me, just ask her point blank: “ yo, call me crazy but this feels targeted. You have to admit it looks sus from my perspective. Be honest with me and I won’t hold it against you: are you concerned my son will interfere with your day? I promise I will respect honesty more than a polite lie. It’s your day and you’re entitled to your preferences.” Give her an out and make your call from there., I would say I tested positive for Covid the day before the wedding and so did your kid and you have to stay home and take care of him and also you don’t want to get everyone at the wedding sick, These child free weddings are so fucking weird to me. Weddings should be a time for family and friends - including kids. But these days people want them to be overly staged and instagram perfect.
That’s not even accounting for the BS reasoning she’s trying feed you. I’d be skipping this one if I were you, her saying she doesn’t “remember” inviting him is sus, if there happens to be children at the wedding then you have your answer. but anyway, does anyone ever try to put him to sleep without breastfeeding? I breastfed my son for 2 years but he would stay asleep with his dad when i’d go out with friends. maybe you can have your sister and him practice going to sleep for a couple of nights the week of the wedding, hes going to cry but if your sister can try to handle it he will eventually fall asleep!, I was just in a wedding as a bridesmaid and so glad it’s over, lol. Childcare with an autistic kid is just a whole extra layer of stress. And you’re expected to be present for all of these parties and dinners and whatever… it’s so stupid and I hear you! Also it’s super shitty she just changed her mind… I would be livid. I’m sure you have spent enough money to not back out but I’d be tempted!
Obviously do whatever is easiest but if I were you I would probably get the hotel. Then we will be close by if you need to leave early or run back and breastfeed him. Also traveling almost 3 hours after a long night wouldn’t be ideal! With that being said, it’s also okay for him to cry and be away from you! But I’m sure that’s hard on your sister. Good luck, it will all be okay! Don’t stress too hard on the unknown 🫶, Well. My first thought was that not taking him would mean you could just have fun at the wedding. But this does sound very complicated and difficult for you. (7 am for photos? No one I know would've shown up for my wedding... 😂)
I guess the question is, how much do you want to go? You have a reasonable case for opting out, though of course your friend may not see it that way. 🙄, Agreed, not much of a friend if she can't find it in herself to allow your 18mth old son to attend. Child free venue is bullcrap, especially with children that young. Would the venue stop parents with newborn babies attending?
I'd skip the wedding, she obviously doesn't value your friendship., I wish I could honestly, but I already made a commitment to be in the wedding., This. I wondered why I had to scroll so far to find someone who would have the same reaction as me. I am HYPER aware that my neurospicy toddler can be a lot. We have skipped events that I knew would be a lot for him to handle/he would be disruptive at, because I have self-awareness, and I don't see any reason to put us in unnecessary uncomfortable situations. That being said - my son has been INVITED to all those events - I have politely declined, and explained that I don't want to draw attention away from the nephew being baptised, or the family friend in a dance recital, but we wish them well. If my child was blatantly EXCLUDED from the invitation because of his differences... That relationship would be over, and hellfire would just shoot out of my face anytime I saw that person for the rest of forever., I wish people would realize that, in certain cases, it means parents aren't able to go. You should be able to have the wedding day you want, but it also means that some people won't be there. If that is the case, you can't spring it on people at the last moment and expect them to rearrange their entire lives to make it work for you., We were only invited to one once, when my son was 6 weeks old. We asked for an exception because the venue was an hour away, I was nursing on demand with no milk supply stored up yet, and at 6 weeks old we simply didn't trust anyone else quite yet to be with him for 4-6 hours. They said no, so we didn't go.
The day after the wedding the groom texted my husband and said, "Hey man, I was really disappointed to not see you at the wedding. I didn't realize when you asked about the baby that that meant you wouldn't come at all."
????????????, When my sis watches him while I’m at work he does take a short nap for her but he has to be rocked ! I just don’t want to stress either of them out because I know it’s a lot for the both of them ! This will be the longest time away from me. I’m having anxiety over it!, A distant cousin had her wedding recently and it was child free, except for anybody who had to drive more than an hour to attend the wedding. I thought that was a pretty good idea. Though it was also one of those cases where the entire family would have lambasted her for telling anybody they couldn’t bring a kid, regardless of how close they lived to the venue. Grandparents like seeing grand babies and great grandbabies., I understand it's her wedding day, but she also doesn't get to ignore everyone else's needs as a result. You need to tell her bluntly how her decision impacts you and if she doesn't care about the extreme duress this is causing you, she is not a solid friend. This is extremely shitty to do to someone., When you have a kid on the spectrum you will be surprised by the people who say openly that they don't want your kid around. Later the bullying starts. I decided early on that my son is a member of my family and anyone who doesn't want him around can go to hell. I would urge you to do the same.
Also, splitting up families at a wedding is bad luck, so you'll be doing your friend a favour really., You said it so well!! I love you xxx, People are so dense. 🤦🏻♀️
|
Level 2 Autistic Tot
|
My son was diagnosed at the end of February as having level 2 autism, so I figured I would give this subreddit a go.
My son is 2 years old and lately, he has been waking up at night screaming and having night terrors -- he did this when he was younger so we thought he had grown out of it. But at night when we try to calm him, he'll be so conflicted about what he wants. He'll want his pacifier and then throw it, he'll want to be picked up and then right away he will start sobbing and wanting down. He'll want to watch something and then want it to be turned off (we try both with and without sound).
It is just so hard to understand what he actually wants/needs. So I'm looking for any advice on this! I just want to make him feel better but my husband and I just seem to make things so much worse for him at night.
|
What appears to be working for my family, at this time is my child receives a melatonin gummy and then a magnesium citrate gummy right before bath/shower time. Then after she’s clean we brush teeth and then lay down for a few minutes while we read, tell her things that she did today that we’re so proud of her for. Sing our good night songs. Now around the full moon she still wakes up in the middle of the night, but otherwise she’s falling asleep and staying asleep from about 8:30 until 6. Now if you try that you’ll want to check with your child’s doctor that it’s suitable for them to take melatonin and magnesium citrate gummies supplements. Zarbee’s melatonin works well for us and then the magnesium citrate is the viteey kids brand., My son does this sometimes. I haven't tried it but maybe some white noise in his room at night?, My son did this as well. He is almost 9 now. We started to provide this or that yes or no prompts when he was younger. He has grown out of it, or he is emotionally mature enough that he doesn't do it anymore.
When he did this, it infuriated me. I made some mistakes, and I raised my voice...twice. I'll carry that until my last breath on this earth. I had to grow and mature fast and realize that his nervous system was in survival mode, and I needed to see his actions as a desperate cry for help.
Sometimes, I feel that my son didn't actually want anything he just wanted to feel love, and his young brain was just reaching out for anything.
Edit to finish my sentence., I'll definitely give this a try! After speaking with my son's pediatrician first, of course. And thank you for the advice, I really hope that this'll help him., Also with the magnesium, expect a change in his bowel movements and make sure he’s monitored/either in person or by camera until he falls asleep., What appears to be working for my family, at this time is my child receives a melatonin gummy and then a magnesium citrate gummy right before bath/shower time. Then after she’s clean we brush teeth and then lay down for a few minutes while we read, tell her things that she did today that we’re so proud of her for. Sing our good night songs. Now around the full moon she still wakes up in the middle of the night, but otherwise she’s falling asleep and staying asleep from about 8:30 until 6. Now if you try that you’ll want to check with your child’s doctor that it’s suitable for them to take melatonin and magnesium citrate gummies supplements. Zarbee’s melatonin works well for us and then the magnesium citrate is the viteey kids brand., My son does this sometimes. I haven't tried it but maybe some white noise in his room at night?, My son did this as well. He is almost 9 now. We started to provide this or that yes or no prompts when he was younger. He has grown out of it, or he is emotionally mature enough that he doesn't do it anymore.
When he did this, it infuriated me. I made some mistakes, and I raised my voice...twice. I'll carry that until my last breath on this earth. I had to grow and mature fast and realize that his nervous system was in survival mode, and I needed to see his actions as a desperate cry for help.
Sometimes, I feel that my son didn't actually want anything he just wanted to feel love, and his young brain was just reaching out for anything.
Edit to finish my sentence., I'll definitely give this a try! After speaking with my son's pediatrician first, of course. And thank you for the advice, I really hope that this'll help him., Also with the magnesium, expect a change in his bowel movements and make sure he’s monitored/either in person or by camera until he falls asleep., What appears to be working for my family, at this time is my child receives a melatonin gummy and then a magnesium citrate gummy right before bath/shower time. Then after she’s clean we brush teeth and then lay down for a few minutes while we read, tell her things that she did today that we’re so proud of her for. Sing our good night songs. Now around the full moon she still wakes up in the middle of the night, but otherwise she’s falling asleep and staying asleep from about 8:30 until 6. Now if you try that you’ll want to check with your child’s doctor that it’s suitable for them to take melatonin and magnesium citrate gummies supplements. Zarbee’s melatonin works well for us and then the magnesium citrate is the viteey kids brand., My son does this sometimes. I haven't tried it but maybe some white noise in his room at night?, My son did this as well. He is almost 9 now. We started to provide this or that yes or no prompts when he was younger. He has grown out of it, or he is emotionally mature enough that he doesn't do it anymore.
When he did this, it infuriated me. I made some mistakes, and I raised my voice...twice. I'll carry that until my last breath on this earth. I had to grow and mature fast and realize that his nervous system was in survival mode, and I needed to see his actions as a desperate cry for help.
Sometimes, I feel that my son didn't actually want anything he just wanted to feel love, and his young brain was just reaching out for anything.
Edit to finish my sentence., I'll definitely give this a try! After speaking with my son's pediatrician first, of course. And thank you for the advice, I really hope that this'll help him., Also with the magnesium, expect a change in his bowel movements and make sure he’s monitored/either in person or by camera until he falls asleep., What appears to be working for my family, at this time is my child receives a melatonin gummy and then a magnesium citrate gummy right before bath/shower time. Then after she’s clean we brush teeth and then lay down for a few minutes while we read, tell her things that she did today that we’re so proud of her for. Sing our good night songs. Now around the full moon she still wakes up in the middle of the night, but otherwise she’s falling asleep and staying asleep from about 8:30 until 6. Now if you try that you’ll want to check with your child’s doctor that it’s suitable for them to take melatonin and magnesium citrate gummies supplements. Zarbee’s melatonin works well for us and then the magnesium citrate is the viteey kids brand., My son does this sometimes. I haven't tried it but maybe some white noise in his room at night?, My son did this as well. He is almost 9 now. We started to provide this or that yes or no prompts when he was younger. He has grown out of it, or he is emotionally mature enough that he doesn't do it anymore.
When he did this, it infuriated me. I made some mistakes, and I raised my voice...twice. I'll carry that until my last breath on this earth. I had to grow and mature fast and realize that his nervous system was in survival mode, and I needed to see his actions as a desperate cry for help.
Sometimes, I feel that my son didn't actually want anything he just wanted to feel love, and his young brain was just reaching out for anything.
Edit to finish my sentence., I'll definitely give this a try! After speaking with my son's pediatrician first, of course. And thank you for the advice, I really hope that this'll help him., Also with the magnesium, expect a change in his bowel movements and make sure he’s monitored/either in person or by camera until he falls asleep.
|
Level two autism
|
So we just got the official diagnosis for my daughter (3 in August). They said she is level two with accompanying language impairment. There are some recommendations on the report but what did you guys do next post diagnosis?
|
My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can., My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can., My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can., My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can., My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can., My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can., My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can., My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can., My son was diagnosed level 2 as well just recently. He turned 3 in February. We are in the United States. He is in developmental preschool and we are trying to get into speech, ot and pt at a center. We have applied for DDD and ALTCS as well to try and get all the support we can.
|
Life after leaving your partner
|
My son is 4 and non verbal. It’s been a roller coaster but I made the decision that doing this alone is probably for the better. I’d like some advice or even testimonies about this kind of scenario. I’m having a hard time and feel so lost and empty. I need to be strong for my boy but fuck does this feel debilitating and lonely. On top of this all I’ve ever known is being a sahm from 19-24 now. Being the only one handling everything and being present up to the diagnosis and therapies. It’s shameful, pitiful, and quite embarrassing. I just want to make it out of this chapter of my life but it’s so hard when being clouded pessimism. I just feel like it’s so unfair his life goes on as usual and in this instance going to get better and change for the better for him. I’m literally at rock bottom. I know I shouldn’t be coming to Reddit for this but I truly don’t have anyone and don’t know what to do and feel like this is the only place I could find people that can relate to this nature. I just want a simple yet happy life with my boy. Im already trying to come to terms that my life will only always be me and him and anything for myself like dating is just not in the cards for me in this lifetime.
|
My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him, My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him, My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him, My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him, My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him, My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him, My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him, My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him, My son is 18 and non verbal, level 3. I happily divorced his father about 8 years ago. I have only ever known being the only caregiver for him (and my 5 other kids), so divorcing his dad changed nothing in my life. Actually, it gave me one less person to have to care for. I just married the most amazing man in October, who loves all my kids and has a special bond with my son who has ASD.
You are not excluded from dating, you just have to be upfront with your situation and be ready to think outside the box when it comes to dating. I remarried this past October to a wonderful man who loves and accepts my son. More than his own father ever could.
I remember feeling that resentment towards my ex husband for just being able to excuse himself from the heaviness of raising a child who has special needs. I had to decide to reframe those types of thoughts because in reality, what is more important in this life than caring for your children? I am the lucky one because I get to spend so much time with my sweet boy. He is bonded to me, my new husband, and my other kids. We value him. His father sees him as a burden and as time has gone on we don't see him too often. Once every few months now and I am hoping it will fade away completely when my youngest turns 18 (november). Currently if my daughter doesn't want to go to her dad's, he won't take my son so I am pretty confident that will happen., Slightly different boat, but I wanted to acknowledge that doing this alone is SO much harder than anyone anticipates. I lost my wife 7 months ago, our daughter is 8 now - she has a chromosomal disorder, non-verbal, ID, etc. I love her more than life itself, but it’s not easy doing this by yourself. Hell, I don’t think being a solo parent is easy with neurotypical kids, let alone in these shoes. I don’t mind it just being my daughter and I, the only person I want to be with is my wife, but boy is it tough handling all this alone., Following. My son is 4.5 and non verbal. Never spoken a word. It’s hard to find someone talking of this age and not talking. Most people’s children have at least a few words at this age., I have a non verbal 4.5 year old. I divorced his dad when my son was 2 and my daughter was 6 months. Life has never been better!
A huge part of it though was having all my shit together with or without him. He was adding nothing beneficial to the equation. I much rather do it alone than deal with an adult man child., Life is better and easier for me single.
I've been single 11 years and my son's are 11 and 18.
It's more peaceful being single.
However at 4 your child could improve a lot and in the future who knows, you could easily date again.
My 18 year old has burn out so has been worse in the last year than ever, I will follow along bc I can relate. We have a 4 yo nonverbal son who is so sweet and smart and I wish I had been able to enjoy his younger years more, but I too am not happy in my relationship. A big barrier to leaving is what you mentioned- I don’t feel like I know how to manage that terrible lonely feeling and quite literally being alone w my son all the time. We have no family here. I just know I would feel exactly as you do .I think you should give yourself credit for listening to yourself about your relationship tho— I honestly wish I was strong enough to. And you will not always feel this way. The pain of being lonely makes your heart wise and will improve your bond with your son, that’s what I think. You may well look back one day and see this time as so special, and as a time when you were actually doing way better than you thought ❤️❤️, No words for this but I have felt the same way just wanting peace, no advice, just want to send you a hug and say that it'll get better. you'll find a routine and get your son support and you'll deal with it all. you got this., Have you tried looking for local special needs moms groups on FB? I met some pretty great women that way, most were single moms, who understood what my life was like. It helped a lot., I raised my daughter completely independently from an infant to adulthood. I was a young mom and didn’t start out in the best place. She is nonverbal and almost 21 now.
It can feel very lonely sometimes and you are not wrong or weak for feeling that way. Also, please be easy on yourself. This is a big life change and having a higher needs child is already hard. I consider myself incredibly optimistic and unflappable and I have had plenty of down feelings over the years.
You can have a wonderful and happy life with your son either with someone else or just the two of you. Both phases of my life, with and without my partner of the last 4 years, have had their ups and downs.
Focus on making you and your little guy happy. Take it one day at a time. Cry if you need to, but also try to let yourself experience the happy moments too. It won’t always be so hard ❤️, I did it. I have a 5 year old and last year, I left my fiance. Moved about an hour away. We weren't doing well together. I'm blessed to have a good job and am able to work wild hours on weekends to cram my 35-40 hours in while he's with dad. Housing was tough but I managed to buy the tiniest condo for him & I. It's a good school district so I don't feel worried he's missing out on anything. He has 0 words as well. I'm finding that I'm focusing more on life than his word count these days. Our outings are spaced out & errands that he cannot tolerate are done while he is at school.
I'm way more carefree and relaxed than I was in my previous situation and it shows. And I think my son appreciates this version of me. I'm able to play with him and I even seem to have more energy for targeted outings like the aquarium on off hours. In the beginning, it was rough. I cried a lot and felt like crud. It got better so very slowly. After being a sahm for 3 solid years, it managed to work out and I would consider it a simple happy life of Neverending potty training and breaded chicken products
Edit: medication helps and I've only JUST started to think about dating again, Similar both with 2 kids under 10. Technically still considered non-verbal. They are with me most of the time and their mother had limited weekend time. Been several years since she left.
I do everything for the kids including all admin/appointments and I work a demanding job and current life situation has halted any potential career advancement (which I was hoping for as I need the money to save for my kids care in the future).
I’ve pretty much reconciled that dating will never happen unless there’s a miracle of a connection with someone who accepts/understands my situation or with someone else who is in a similar situation., I'm a couple years out from splitting with the father of my children, and life is steadily improving for me and my kids! I can't say the same would be true if I'd stayed with their dad.
I completely understand what you mean about pessimism in regards to dating - I still feel like that, honestly. What has helped me is doing my best to cultivate good relationships with friends and family where I can, and trying to make time for hobbies and other things that bring me joy. It's hard to make the time - I have 6 year old twins with ASD, so all the paperwork and appointments gets pretty overwhelming sometimes - but those moments when I'm able to make time are even more special as a result.
In the early days of splitting from your partner, everything is being figured out, everything is different, and that can be scary to navigate. Over time, you'll develop a new normal, and that stability will hopefully help you feel better too., same boat. I would love to leave but due to intensive therapies and lack of support it's just not an option. Telling friends that, i'm always told that there's always an option. There isn't. it's just not realistic. i stay at home to make sure he can be there for the endless dr appointments and therapies. I think my "partner" (in quotes bc partner in name only) knows how trapped i am and uses it to his benefit, frankly. Any time i've tried to leave i'm met with "incarceration rates of fatherless children" and all other fun statistics for why i should stay in a borderline abusive and controlling situation. It sucks, but it's the sacrifice i need to make for now so there's no interruption in care and therapies. I just can't risk a setback with my son. He's progressed so much in the last year, finally labelling and saying some words. I'm terrified that a change would cause a regression. I hope when we're all older things get easier that maybe i can have a better life and not feel so trapped., It sounds like I wrote this post. My son was around 3 when I left his dad, and is now 7 and still nonverbal. But it was the best decision I ever made. He was gone from 7-7 every day then would want to go out with his friends. Mind you the baby was asleep by 8 every night. I was home M-F as a stay at home mom, then worked 32 hrs on the weekend (16 hour shifts sat & sun) the burnout was unreal. The loneliness was unreal. It was very very hard to leave. I left with 1400$ to my name, but it was worth everything. I’m now married to an amazing man who loves my son very much and will help in literally any way he can, I have three kids. My oldest two are on the spectrum. They are not easy children. I spend 100% of my time caring for them and their little sister. I had to leave their dad because he was abusive.
I gotta tell you, that first six months after leaving was the hardest time of my entire life. But then things got SO much better. My kids are thriving. I am thriving. I’m back in school and trying really hard to get my shit together. I feel so free and optimistic of our futures! I wouldn’t change my decision to leave for anything.
It’s definitely hard, but so much better than being in a relationship that makes you unhappy. Also, I don’t have anyone willing to babysit my kids for me. I have them all the time and I do not feel like I can’t date. I mean, I’m not going on dinner dates with men every week or anything. But babysitters do exist and good men do as well. The right one will accept you and your child one day ♥️, I’m not sure if this helps you but my son’s father leaving is the best thing that ever happened to us. It’s definitely a lot of work and a lot of change but my sons environment is so much calmer and he’s finally able to get the therapy he needs now that his father isn’t here to insist “nothings wrong” and he just “needs more discipline”, Hey there. First off you are so strong for doing what is right for you despite it not being the easy path. Life always finds a way to sort itself out eventually.
I am a stepparent to a nonverbal, level 3, autistic child. He’s going on 7 now. I came into his life when he was 3.5. His mom and my boyfriend split when he was 1.5. He was already showing signs of autism but not formally diagnosed at that time.
They coparent and it’s not easy. I’ll admit that but that is largely due to their past. My boyfriend was open and honest from the start about his son having autism and needing a lot of support. The right person won’t be scared off by that. If you choose to date, I’m here to say it’s possible for you!
My partner did it on his own with split custody for 2 years. And even now he is the primary parent. I step back when it’s his placement time and my partner is a great dad. He manages to care for his special needs son in an exceptional way while also making me feel like I’m important.
Before stepson started kindergarten he was in an early intervention program where he spent nearly 40 hours a week doing therapy. Try to see if there are those type of resources in your area because they really help relieve the pressure of trying to do it all on your own. I know it made all the difference for us. He is still non verbal for the most part but he can say certain phrases when prompted, he’s toilet trained for pee (still working on poo), and so much more.
Your love for your boy is clear as day and he’s so lucky to have you as his mom. 💜, I was pretty much broken up with my daughter’s dad by the time I had her. It was fine for us, and I met my current partner when she was 5. He knew from day one that my daughter is my priority, and he’s been an excellent support. My ex sees her on the weekends but his job makes him unavailable at times. It is what it is. She has a very stable home with us., Congrats on making what sounds like some really hard choices that you feel will be best for your son. I am proud of you for doing something so hard. Humans are incredible beings and we can survive so much.
It makes sense to feel isolated and worry about dating. However, I would just focus on building up yourself and your child for the next few year. The early years are very tough, and you’ll need a good long while to recover from the break down of your relationship. You also want to get used to being on your own before you add the chaos of someone else.
My great-grandma brought up 3 kids as a single mom in the midst of the depression (the 4th child had hemophilia and died in childhood). Whenever life seems impossible I think of her. You come from a long line of survivors (admittedly, the sample is bias… all our direct relatives had to make it to reproductive age for us to exist!) and you are tougher than you imagine. It will be hard, horribly hard, but…. There will also be moments of incredible beauty.
On a serious note, you may wish to think about counselling if the dark clouds persist. Our lives are very hard and it makes sense to have big feelings about it, but when you lose the capacity to feel the tiny slivers of joy in your life, then it’s time to get help. Sometimes it means learning how to reframe things, calm our minds and bodies and develop new skills, sometimes it means medication and other treatments. For me, a variety of different interventions have changed my outlook and help me to find joy in tough times. And there is always, always joy…. Sometimes it just gets dwarfed by the sorrow, hardship, indignities and troubles (shit) piled all around it!, I don't know your situation but I'm going through a divorce right now and I don't recommend it with special needs kids. The court doesn't differentiate, they treat all parents and kids the same. My ex abandoned our kids for 8 months, with zero warning, and the day he moved back, he got every other day visitation. That I have to supervise. Just an example., You aren’t alone, I’ve been in similar situation unemployed the past 4 years I had to quit my nursing job bc covid and my son was very sick at birth. We aren’t divorced at the moment but I see it coming fairly soon. They do get to go on with their lives and you’re right it’s totally unfair and SUCKS. You aren’t alone, we’re all in this together. Vent as much as you need., You sound like a very strong mom and person. I think you’ll be ok. I’m in a similar situation and just waiting for it to get better/easier/less rock bottom-y. I try to take it one day at a time and constantly saying out loud “I’m ok. You’re ok. We’re going to be ok.” Even if I don’t believe it but it’s been helpful. You will be ok too 💛, Hey, there is nothing shameful or pitiful or embarrassing about being the best parent you can be for your child.
Chin up. Lotta good advice in here by other commenters., I have a 7yo daughter with emerging language and a 3yo son who is non-verbal. My ex and I split last June and he hasn't seen the kids since last August (his choice). Doing this alone isn't easy. I admit that there are times when I feel like I'm drowning. There are also glorious moments of joy and love. Removing the negativity from our lives brought about some amazing changes in my children. Their therapists can't believe how much progress they've made in such a short time. I regret not asking my ex to leave sooner. I hadn't realized how much his negative demeanor was impacting the children. I'm a happier, more confident, more fun mom now and that helps too.
As far as being a SAHM, you may theoretically still be able to. There is a program called In-Home Support Services (IHSS) that will pay a caregiver to stay home with a disabled person. This program is the only reason that I can do this. It also allows you to select a caregiver if you would prefer to work. Your son may qualify. I believe that he would have to be approved for SSI first.
Beyond that, if it's possible to find a local autism support group, it'll help you build your village. You might even post on a local FB page or neighborhood app to see if anyone would be interested in a park/coffee meetup.
My kids are both in school and have multiple therapies. I use that time for errands and self-care. Self-care is vitally important to avoid burnout. It can be as simple as lounging in bed for a bit after I get them on the bus or as indulgent as a massage.
If you are in California, please feel free to DM. I am somewhat familiar with the programs and services available, especially in SoCal.
P.S. Love is still possible. There is even a [dating site](https://www.special-hearts.com) for parents just like us. I'm not there yet but it gives me hope to know it's there when I'm ready., Frankly i can imagine doing this alone is better.
Its overall extremely gruelling, difficult. No easy choices. Lots of mud on your face, humiliation, frustration.
I think its all the more embarassing that theres another person whos just as frustrated or more than me and we just make the other even more pissed.
Decisions for example - theres no good options, and whatever u choose it sucks anyway. At least when by yourself you dont have to argue forever about every bad choice every day. You just move on without someone nagging you and reacting to the craziness that youre trying not to react to., Sorry to read that your partner wasn't able to cope with his responsibilities as a father.
At least if he wasn't invested at all in helping your son, this will not change much to your daily life, except that you won't have to deal with a partner that can't handle responsibility, which is at least a plus., I became a mom at 20 and my son will be 4 in August, I’ll be 24 in June, I was with his father up until I was 22 and then I left (we were together a total of 5 years)
I do not regret leaving at all it was easily the best decision I could’ve made for us
My son is nonverbal and level 3 for autism. We have trouble getting him to eat anything so he’s completely on pediasures and in feeding therapy and it has been hard
I had a bit of a rough start considering I didn’t have work experience or a high school diploma (not bc I willingly dropped out but that’s a different story) or a drivers license
I also didn’t really have family to help so believe me it was hard 😅 but I think us being human we will adapt when it comes down to it and there’s a lot of resources
As for the dating I wouldn’t rule it out there are so many understanding people out there, it just requires a lot of boundaries and explaining and like other stuff but definitely not impossible, [removed], Totally agree! I love hearing stories like yours.
I also found a partner who I love and who is so wonderful and loving to my daughter. The relationship has also given her three step brothers which was so unexpected, but also amazing.
New beginnings are scary sometimes, but they can give us things we never even dreamed were possible., Oh did I so need to read this today ❤️
I just started the divorce process a mo th ago and I feel so frickin alone... and that man sirs his ass around a lit but does very little to help with our 6yo... or the other 2 children... or me...
Thank you for your story, Being a widower is tough 🥺 Be kind to yourself 🫂, I’m so sorry for your loss. How did you do it alone? I am looking at a similar situation and I don’t know how I am going to work., Sorry, man. That’s awful. And you are 100% correct, it is so much harder going it alone., My son is 4.5 and totally non speaking too. We are looking into an aac, My girl is 5 and is mostly nonverbal. At 4 she didn't say anything at all, not once. Now she says some very basic words here and there like cat, dog, hello, green, etc. but they're hard to understand. She has started singing quite a bit, though. She can also read a few words. Kindergarten helped so much with her progress. Don't lose hope., My son is 4.5 and has echolia as well. When he was 3.5 I really thought he was getting close but he hasn’t progressed at all in that area., The journey is different for every kid! Our daughter was nonverbal at that age. She picked up a free words in kindergarten. We ended having to put her medication forage different issue last October and were amazed by how much more she started speaking. It’s still mostly a word here and there but it’s more than it was. You never know when something is going to bring about a change! Stay strong!, She can date if he doesn’t, too. :), I’m sorry you can relate and know the feeling. I truly hope you find your way and what’s best for you and your son. It’s hard and feels unfair. What you described I tried sooo hard to push thru for over 5 years for the sake of my son but really he doesn’t deserve that and I just finally broke over the weekend. It’s not healthy for me and it’s not fair for my son. It still doesn’t feel real. I don’t feel hurt necessarily, but just pit of emptiness and despair. Even now and probably for awhile I’m going to question if I really made the right decision but I know deep down it was. I need to own it., I’m in the early days and it all feels so shaky (I’m holding our life together with threadbare duct tape it seems), so I really appreciate this. I didn’t realize how much of my feelings of dread are the unknown of what our impending “new normal” will look like and I’m hopeful that stability will help me feel better., [deleted], This makes me happy reading this, there’s hope out there., Hopefully.
I can't even have a friend visit so no way on earth I could .
I hope other people aren't as restricted and isolated as me tho.
It's a trauma getting boiler checks etc here, Yes. So relatable I would feel just the same. From what I understand tho it will get way better with time and you will
Have peace that you did what was best for your family., ignore him, Yeah, I definitely empathize with you. Yet there are people who are experienced in this, autism is far more common than it used to be, all kinds of neurodivergent has much more awareness these days than it used ,
and there are many people totally willing to get involved with a parent of a special-needs kid and genuinely love them. It’s just hard to find them (IMO) because there’s *so many* more “conditional love” people. I mean I get it…I understand, and I don’t judge people who choose not to, too. It takes all kinds.
I feel like people are very hopeless when it comes to finding love again and there’s definitely love out there for everyone.
ETA: I’m broken up with my partner, we were together for 24 years. He has cohabitated with me for 27 months now and is signing a lease soon. I met a wonderful human being online through an LGBTQ plus dating app, and this person didn’t even want kids at all and saw that I had children in my profile and still decided to give me a chance and he doesn’t mind that my kid is autistic, he himself is autistic And I mean being able to do things online definitely helps with our kind of situation if I had to go on regular dates where I leave the house that wouldn’t happen lol I’ve only been able to meet him in person once. I also can’t leave him with his dad for too long because he doesn’t parent, he is just like a sibling to him., I've just got to used to being isolated now it's made me even more socially anxious than I used to be.
Even a workman coming in to service boiler causes a huge meltdown so no way I could have someone round for coffee or anything.
Just the way it has to be just now.
I do feel.very sorry for my youngest not being able to have friends round tho, I’m sorry about your youngest, not being able to have friends over :/
I feel you. I am so isolated. I definitely wholeheartedly identify with that. This person that I met had in their profile that they had really bad anxiety- the human version of a shaky, scared greyhound. I told them that I am extremely awkward and have anxiety too. I have not talked to any adults in a looong time, I’ve lost contact with pretty much every single one of my friends, he totally was open minded about it. If anything, he went into this assuming that he would be the one that’s got all the mental issues and definitely seems totally “normal” compared to me haha. The time that we did meet was wonderful we went to the drive-through and after the initial half hour of being super awkward actually, I just kind of fell right back into being able to have a banal conversation with somebody else, and I have all kinds of other serious trauma stuff as well, so if I can fall into existing near and interacting with another human being mostly naturally, hopefully the same thing will happen for you too, if that’s what you want one day. we made plans that I was not able to show up for four times and he is still my long distance boyfriend.
I too was very accustomed to & accepted being alone. Hell, since I was a kid, I always had this fantasy of living like a bog witch in the forest anyhow.
Because my ex and I hadn’t had any kind of intimacy or affection for almost a decade before breaking up that’s like 13 years of no intimate human contact and I think that has a lot to do with my…,feeling like my spirit is dying.
So if you ever want to PM me, please feel free I mean I get it and you can always vent to me and we can be each other’s friends, too., Thankyou.
Same if you ever want to pm please do
My eldest has Psychology later this month so I'm pinning all my hopes on talking therapy helping him
|
Limited Scope of OT Services Issue
|
Hi Everyone,
I suspect my 22m may have either autism, adhd, something. he does also possibly have hearing issues, which is pending an appt with his ENT. I have him In speech therapy and had an occupational therapy (OT) eval yesterday.
My son is fine in his gross/finemotor skills, but needs help with his attention span, some sensory issues, his social interactions. I thought I read OTs can assist in these areas.
At the beginning of the appt, they told me the doctor sent a referral only for help for fine motor skills, which I wasn’t aware of. They related that they can only concentrate his services in that area and not the other areas of my concern.
So after they were done, they said they can help with his fine motor skills (which honestly he needs no help in) but kept hinting that they could also give tips for his attention span. They finally said that insurances don’t like to cover sensory issues and what not, so they can only help in fine motor skill, but will try to give tips for other areas.
I left not sure what to think. So now they want to list that my son has a fine motor delay, which he doesn’t have, while they cant officially say if they will help in the areas he actually needs help in.
Is this common? Is there another type of area I should have went to for help? I’m trying to be proactive to help my son, but keep getting roadblocks, just feeling lost.
|
If your child had an OT evaluation and after doing the evaluation and appropriate paperwork they have offered services, then he does have a delay. They would need to show proof to be able to bill insurance. There is a chance that he didn't qualify for sensory simply because he is so young and many sensory issues can be normal for toddlers...if they persist as he ages he should qualify.
I would honestly take the offer of OT and let them give you tips. Even if he was qualified for OT for sensory integration disorder, you will still be given tips to use at home because sensory issues happen everywhere...not just in the OT office. So, I think this is their way of saying they will help you with sensory as much as they can without being able to be compensated for it., If your child had an OT evaluation and after doing the evaluation and appropriate paperwork they have offered services, then he does have a delay. They would need to show proof to be able to bill insurance. There is a chance that he didn't qualify for sensory simply because he is so young and many sensory issues can be normal for toddlers...if they persist as he ages he should qualify.
I would honestly take the offer of OT and let them give you tips. Even if he was qualified for OT for sensory integration disorder, you will still be given tips to use at home because sensory issues happen everywhere...not just in the OT office. So, I think this is their way of saying they will help you with sensory as much as they can without being able to be compensated for it., If your child had an OT evaluation and after doing the evaluation and appropriate paperwork they have offered services, then he does have a delay. They would need to show proof to be able to bill insurance. There is a chance that he didn't qualify for sensory simply because he is so young and many sensory issues can be normal for toddlers...if they persist as he ages he should qualify.
I would honestly take the offer of OT and let them give you tips. Even if he was qualified for OT for sensory integration disorder, you will still be given tips to use at home because sensory issues happen everywhere...not just in the OT office. So, I think this is their way of saying they will help you with sensory as much as they can without being able to be compensated for it., If your child had an OT evaluation and after doing the evaluation and appropriate paperwork they have offered services, then he does have a delay. They would need to show proof to be able to bill insurance. There is a chance that he didn't qualify for sensory simply because he is so young and many sensory issues can be normal for toddlers...if they persist as he ages he should qualify.
I would honestly take the offer of OT and let them give you tips. Even if he was qualified for OT for sensory integration disorder, you will still be given tips to use at home because sensory issues happen everywhere...not just in the OT office. So, I think this is their way of saying they will help you with sensory as much as they can without being able to be compensated for it.
|
Limiting time spent on Roblox as well as outbursts.
|
My sons special interest is Roblox, and he knows all the ins and outs of the game. It has taught him how to read and write, as well as taught him a great deal of english, so it has been a positive influence.
The only issue is that he becomes extremely angry with the game, whenever something occurs that he considers unfair. If other players don't treat him as well as he treats them, or if there is an error in a map, he will get more and more angry until we have an explosion on our hands.
His love of Roblox has caused some issues in his school (He goes to a autism-specialist school), where it interferes with his daily schedule. Today he didn't want to go on a school outing, because he would rather sit and play Roblox. I've consulted them a bit about this issue, and suggested they try including him in the decision making process, and encourage him to come up with ideas for rules around Roblox.
The question is, is there any kinds of apps that can help guide him? I have parenting controls on his phone, where I can limit the use of Roblox outright, but that seems too harsh, and he will absolutely explode if the game suddently closes down without warning. What I'm hoping for is an app that will gently nudge him when a timer runs out, and gently reminds him that it's time to stop playing, without forcing him to quit.
Also, how do we deal with his anger? In the mornings we usually had chaos, because he would erupt multiple times due to his game. We made restrictions, so he isn't allowed to play his game before he's on his bus in the morning, or it's 9 AM which seems to have helped with the explosions. But we want to have the restrictions make sense, and be as gentle in its transitions as possible.
He's 7, and he generally thrives and is a very happy kid after going to his new school. We just need to reign in the Roblox chaos. :)
Any advice appreciated.
|
Schedule, he needs to have a set time he’s allowed to play. I would also encourage Minecraft instead by allowing him to use “extra game time” on a game outside of Roblox. Frankly, I would buy Minecraft and load it with some credits. It’s a much healthier game.
My kiddos behavior is really bad after she plays Roblox. It’s just too stimulating with her and it’s unhealthy for her to have too much time on., I've "played" Roblox with my kiddo in real life. At the park he "chooses the map" and the obstacle course we will do. Maybe apply that to different situations? "Pick your avatars outfit" (getting dressed) Show me how a roblox avatar would brush their teeth! Talk/walk like the avatars do while you do certain real life tasks etc. Still gives in to the special interest while getting the real things done, encourages some imagination and gets them off the screen for a bit., This sounds exactly like my friend and her son(10)! For a hot second I thought it was her, lol.
They are weaning him off of it by slowly restricting his game hours and setting a timer on their watches when he needs to stop. Gaming in general is his special interest but not all games have been healthy for him, so it’s been difficult. He has broken more than one iPad when “the game is being mean”, so I totally get the reactions from your son too.
Finding a (healthy) replacement is the real tricky part, other than trying out new things and finding something that clicks with him instead. So sorry it’s causing so many problems and wish I had better advice for you!, I had the same issue for years with my son (now 12). I utilized Google Family Link as it locks the device at a certain time and produces a Pop-Up alert for a 5 minute warning before locking. That alone helped a lot with structure.
I will also agree that Minecraft is much better than Roblox for intensity.
The other app my son has grown to love is Scratch. It’s built by MIT and teaches kids how to program and i have found myself spending a good deal of time on it myself. Might be worth checking out, it is web based only though.
I don’t know where on the severity spectrum your child is but mine is Level 2 - Moderate and after adding Fluoxetine the anger/outbursts have subsided., My kid plays Minecraft and has never played Roblox but we still get the intense frustration and anger. It's not the game that's the issue (although I agree that Minecraft is a much more appropriate game for kids), it's not being able to handle frustrations and challenges in the game (things not working the way he expects) and having to stop playing. That transition off of Minecraft is hard.
We don't allow Minecraft (or any video games) when we know he doesn't have the bandwidth for regulation (like in the evenings). It's not perfect, but it has helped. We also completely take it away if he hits/hurts others when he's angry about the game. It's okay to be frustrated when playing a game but he cannot vent that frustration on others.
I'm not going to lie, setting boundaries for the first time it's not pleasant, but it does pay off.
We don't use an app, but we do use a Time Timer. My kid would definitely be too focused on playing to notice an app giving a nudge that time is almost up, but it's cueing him to look at the time remaining on the timer and the beeping are much more effective. As he's getting older, he's able more often (especially when well regulated) to stop when the timer goes off. But again, it's not every time by any means--still a work in progress!
On school mornings we use a visual schedule so he knows exactly when in his routine screens have to be turned off. That's probably our biggest success but it took a few months of consistently following through on stopping screens at the same part of his routine every day and weathering the dysregulation storms to get to this point!
We also encourage him to talk about Minecraft as much as he wants when he's not able to play it. Sometimes giving us a monologue about his plans helps him regulate his emotions. , I agree with Minecraft vs. Roblox, Roblox was way too intense for my kid when he was 6 or 7. Minecraft doesn’t have a good place to “stop” (like after completing a level) but in general it’s more calming, especially if you’re playing in creative mode and can’t die., Schedule, he needs to have a set time he’s allowed to play. I would also encourage Minecraft instead by allowing him to use “extra game time” on a game outside of Roblox. Frankly, I would buy Minecraft and load it with some credits. It’s a much healthier game.
My kiddos behavior is really bad after she plays Roblox. It’s just too stimulating with her and it’s unhealthy for her to have too much time on., I've "played" Roblox with my kiddo in real life. At the park he "chooses the map" and the obstacle course we will do. Maybe apply that to different situations? "Pick your avatars outfit" (getting dressed) Show me how a roblox avatar would brush their teeth! Talk/walk like the avatars do while you do certain real life tasks etc. Still gives in to the special interest while getting the real things done, encourages some imagination and gets them off the screen for a bit., This sounds exactly like my friend and her son(10)! For a hot second I thought it was her, lol.
They are weaning him off of it by slowly restricting his game hours and setting a timer on their watches when he needs to stop. Gaming in general is his special interest but not all games have been healthy for him, so it’s been difficult. He has broken more than one iPad when “the game is being mean”, so I totally get the reactions from your son too.
Finding a (healthy) replacement is the real tricky part, other than trying out new things and finding something that clicks with him instead. So sorry it’s causing so many problems and wish I had better advice for you!, I had the same issue for years with my son (now 12). I utilized Google Family Link as it locks the device at a certain time and produces a Pop-Up alert for a 5 minute warning before locking. That alone helped a lot with structure.
I will also agree that Minecraft is much better than Roblox for intensity.
The other app my son has grown to love is Scratch. It’s built by MIT and teaches kids how to program and i have found myself spending a good deal of time on it myself. Might be worth checking out, it is web based only though.
I don’t know where on the severity spectrum your child is but mine is Level 2 - Moderate and after adding Fluoxetine the anger/outbursts have subsided., My kid plays Minecraft and has never played Roblox but we still get the intense frustration and anger. It's not the game that's the issue (although I agree that Minecraft is a much more appropriate game for kids), it's not being able to handle frustrations and challenges in the game (things not working the way he expects) and having to stop playing. That transition off of Minecraft is hard.
We don't allow Minecraft (or any video games) when we know he doesn't have the bandwidth for regulation (like in the evenings). It's not perfect, but it has helped. We also completely take it away if he hits/hurts others when he's angry about the game. It's okay to be frustrated when playing a game but he cannot vent that frustration on others.
I'm not going to lie, setting boundaries for the first time it's not pleasant, but it does pay off.
We don't use an app, but we do use a Time Timer. My kid would definitely be too focused on playing to notice an app giving a nudge that time is almost up, but it's cueing him to look at the time remaining on the timer and the beeping are much more effective. As he's getting older, he's able more often (especially when well regulated) to stop when the timer goes off. But again, it's not every time by any means--still a work in progress!
On school mornings we use a visual schedule so he knows exactly when in his routine screens have to be turned off. That's probably our biggest success but it took a few months of consistently following through on stopping screens at the same part of his routine every day and weathering the dysregulation storms to get to this point!
We also encourage him to talk about Minecraft as much as he wants when he's not able to play it. Sometimes giving us a monologue about his plans helps him regulate his emotions. , I agree with Minecraft vs. Roblox, Roblox was way too intense for my kid when he was 6 or 7. Minecraft doesn’t have a good place to “stop” (like after completing a level) but in general it’s more calming, especially if you’re playing in creative mode and can’t die., Schedule, he needs to have a set time he’s allowed to play. I would also encourage Minecraft instead by allowing him to use “extra game time” on a game outside of Roblox. Frankly, I would buy Minecraft and load it with some credits. It’s a much healthier game.
My kiddos behavior is really bad after she plays Roblox. It’s just too stimulating with her and it’s unhealthy for her to have too much time on., I've "played" Roblox with my kiddo in real life. At the park he "chooses the map" and the obstacle course we will do. Maybe apply that to different situations? "Pick your avatars outfit" (getting dressed) Show me how a roblox avatar would brush their teeth! Talk/walk like the avatars do while you do certain real life tasks etc. Still gives in to the special interest while getting the real things done, encourages some imagination and gets them off the screen for a bit., This sounds exactly like my friend and her son(10)! For a hot second I thought it was her, lol.
They are weaning him off of it by slowly restricting his game hours and setting a timer on their watches when he needs to stop. Gaming in general is his special interest but not all games have been healthy for him, so it’s been difficult. He has broken more than one iPad when “the game is being mean”, so I totally get the reactions from your son too.
Finding a (healthy) replacement is the real tricky part, other than trying out new things and finding something that clicks with him instead. So sorry it’s causing so many problems and wish I had better advice for you!, I had the same issue for years with my son (now 12). I utilized Google Family Link as it locks the device at a certain time and produces a Pop-Up alert for a 5 minute warning before locking. That alone helped a lot with structure.
I will also agree that Minecraft is much better than Roblox for intensity.
The other app my son has grown to love is Scratch. It’s built by MIT and teaches kids how to program and i have found myself spending a good deal of time on it myself. Might be worth checking out, it is web based only though.
I don’t know where on the severity spectrum your child is but mine is Level 2 - Moderate and after adding Fluoxetine the anger/outbursts have subsided., My kid plays Minecraft and has never played Roblox but we still get the intense frustration and anger. It's not the game that's the issue (although I agree that Minecraft is a much more appropriate game for kids), it's not being able to handle frustrations and challenges in the game (things not working the way he expects) and having to stop playing. That transition off of Minecraft is hard.
We don't allow Minecraft (or any video games) when we know he doesn't have the bandwidth for regulation (like in the evenings). It's not perfect, but it has helped. We also completely take it away if he hits/hurts others when he's angry about the game. It's okay to be frustrated when playing a game but he cannot vent that frustration on others.
I'm not going to lie, setting boundaries for the first time it's not pleasant, but it does pay off.
We don't use an app, but we do use a Time Timer. My kid would definitely be too focused on playing to notice an app giving a nudge that time is almost up, but it's cueing him to look at the time remaining on the timer and the beeping are much more effective. As he's getting older, he's able more often (especially when well regulated) to stop when the timer goes off. But again, it's not every time by any means--still a work in progress!
On school mornings we use a visual schedule so he knows exactly when in his routine screens have to be turned off. That's probably our biggest success but it took a few months of consistently following through on stopping screens at the same part of his routine every day and weathering the dysregulation storms to get to this point!
We also encourage him to talk about Minecraft as much as he wants when he's not able to play it. Sometimes giving us a monologue about his plans helps him regulate his emotions. , I agree with Minecraft vs. Roblox, Roblox was way too intense for my kid when he was 6 or 7. Minecraft doesn’t have a good place to “stop” (like after completing a level) but in general it’s more calming, especially if you’re playing in creative mode and can’t die., Schedule, he needs to have a set time he’s allowed to play. I would also encourage Minecraft instead by allowing him to use “extra game time” on a game outside of Roblox. Frankly, I would buy Minecraft and load it with some credits. It’s a much healthier game.
My kiddos behavior is really bad after she plays Roblox. It’s just too stimulating with her and it’s unhealthy for her to have too much time on., I've "played" Roblox with my kiddo in real life. At the park he "chooses the map" and the obstacle course we will do. Maybe apply that to different situations? "Pick your avatars outfit" (getting dressed) Show me how a roblox avatar would brush their teeth! Talk/walk like the avatars do while you do certain real life tasks etc. Still gives in to the special interest while getting the real things done, encourages some imagination and gets them off the screen for a bit., This sounds exactly like my friend and her son(10)! For a hot second I thought it was her, lol.
They are weaning him off of it by slowly restricting his game hours and setting a timer on their watches when he needs to stop. Gaming in general is his special interest but not all games have been healthy for him, so it’s been difficult. He has broken more than one iPad when “the game is being mean”, so I totally get the reactions from your son too.
Finding a (healthy) replacement is the real tricky part, other than trying out new things and finding something that clicks with him instead. So sorry it’s causing so many problems and wish I had better advice for you!, I had the same issue for years with my son (now 12). I utilized Google Family Link as it locks the device at a certain time and produces a Pop-Up alert for a 5 minute warning before locking. That alone helped a lot with structure.
I will also agree that Minecraft is much better than Roblox for intensity.
The other app my son has grown to love is Scratch. It’s built by MIT and teaches kids how to program and i have found myself spending a good deal of time on it myself. Might be worth checking out, it is web based only though.
I don’t know where on the severity spectrum your child is but mine is Level 2 - Moderate and after adding Fluoxetine the anger/outbursts have subsided., My kid plays Minecraft and has never played Roblox but we still get the intense frustration and anger. It's not the game that's the issue (although I agree that Minecraft is a much more appropriate game for kids), it's not being able to handle frustrations and challenges in the game (things not working the way he expects) and having to stop playing. That transition off of Minecraft is hard.
We don't allow Minecraft (or any video games) when we know he doesn't have the bandwidth for regulation (like in the evenings). It's not perfect, but it has helped. We also completely take it away if he hits/hurts others when he's angry about the game. It's okay to be frustrated when playing a game but he cannot vent that frustration on others.
I'm not going to lie, setting boundaries for the first time it's not pleasant, but it does pay off.
We don't use an app, but we do use a Time Timer. My kid would definitely be too focused on playing to notice an app giving a nudge that time is almost up, but it's cueing him to look at the time remaining on the timer and the beeping are much more effective. As he's getting older, he's able more often (especially when well regulated) to stop when the timer goes off. But again, it's not every time by any means--still a work in progress!
On school mornings we use a visual schedule so he knows exactly when in his routine screens have to be turned off. That's probably our biggest success but it took a few months of consistently following through on stopping screens at the same part of his routine every day and weathering the dysregulation storms to get to this point!
We also encourage him to talk about Minecraft as much as he wants when he's not able to play it. Sometimes giving us a monologue about his plans helps him regulate his emotions. , I agree with Minecraft vs. Roblox, Roblox was way too intense for my kid when he was 6 or 7. Minecraft doesn’t have a good place to “stop” (like after completing a level) but in general it’s more calming, especially if you’re playing in creative mode and can’t die.
|
Looking for a particular specialist
|
Hello everyone, I'm seeking guidance on finding a pediatric neuro psychologist specializing in ADHD, Autism, and Behavior. My 7-year-old brother requires specialized care, and I'm looking for recommendations or advice on how to find such a specialist. Any assistance would be greatly appreciated. Thank you!
Ps: anybody from US(preferably west coast) or India will help
|
Look at Children's hospitals. Many areas have specific hospitals for children that house the specific specialties. I believe you would be looking for something like developmental-behavioral pediatrics., Personally, I think you'd be better off coordinating care yourself between the multiple disciplines because what you are asking for spans different medical fields so you'd need someone who has an excessive number of degrees and licenses for what you've asked for, and it's likely going to be very very hard to find and very expensive. Neuro and psyc are related, but different diciplines (MD, and requires at least 3 residencies cuz you also want a ped specialist) and the behavior is therapy (LSW) and not many people will have all that.
Another way to go would be a neuroafferming therapist, who can treat the behavioral issues and autism symptoms (so that's why I am recommending it) plus someone who can prescribe for the adhd.
Unless there is another reason you need a neurologist, you can get adhd treatment from a pediatrician or psychatrist. Neuros don't really treat adhd much anymore, and those that do that I've interacted with don't advertise it anymore becuase psychiatrists are mainly treating it now.
If you want adhd specific advice, you could add on an adhd coach (so it would be therapist, adhd coach, and someone to prescribe adhd meds with an MD). All of these are widely available, cuz adhd is very common, and all will generally treat kids and have a lot ofpsychiatrist. It's also way more likely to be covered at a higher rate and in net work this way.
If you are willing to consider a neuroafferming therapist, therapyden is the resource I like to use to find a therapist., Look at Children's hospitals. Many areas have specific hospitals for children that house the specific specialties. I believe you would be looking for something like developmental-behavioral pediatrics., Personally, I think you'd be better off coordinating care yourself between the multiple disciplines because what you are asking for spans different medical fields so you'd need someone who has an excessive number of degrees and licenses for what you've asked for, and it's likely going to be very very hard to find and very expensive. Neuro and psyc are related, but different diciplines (MD, and requires at least 3 residencies cuz you also want a ped specialist) and the behavior is therapy (LSW) and not many people will have all that.
Another way to go would be a neuroafferming therapist, who can treat the behavioral issues and autism symptoms (so that's why I am recommending it) plus someone who can prescribe for the adhd.
Unless there is another reason you need a neurologist, you can get adhd treatment from a pediatrician or psychatrist. Neuros don't really treat adhd much anymore, and those that do that I've interacted with don't advertise it anymore becuase psychiatrists are mainly treating it now.
If you want adhd specific advice, you could add on an adhd coach (so it would be therapist, adhd coach, and someone to prescribe adhd meds with an MD). All of these are widely available, cuz adhd is very common, and all will generally treat kids and have a lot ofpsychiatrist. It's also way more likely to be covered at a higher rate and in net work this way.
If you are willing to consider a neuroafferming therapist, therapyden is the resource I like to use to find a therapist., Look at Children's hospitals. Many areas have specific hospitals for children that house the specific specialties. I believe you would be looking for something like developmental-behavioral pediatrics., Personally, I think you'd be better off coordinating care yourself between the multiple disciplines because what you are asking for spans different medical fields so you'd need someone who has an excessive number of degrees and licenses for what you've asked for, and it's likely going to be very very hard to find and very expensive. Neuro and psyc are related, but different diciplines (MD, and requires at least 3 residencies cuz you also want a ped specialist) and the behavior is therapy (LSW) and not many people will have all that.
Another way to go would be a neuroafferming therapist, who can treat the behavioral issues and autism symptoms (so that's why I am recommending it) plus someone who can prescribe for the adhd.
Unless there is another reason you need a neurologist, you can get adhd treatment from a pediatrician or psychatrist. Neuros don't really treat adhd much anymore, and those that do that I've interacted with don't advertise it anymore becuase psychiatrists are mainly treating it now.
If you want adhd specific advice, you could add on an adhd coach (so it would be therapist, adhd coach, and someone to prescribe adhd meds with an MD). All of these are widely available, cuz adhd is very common, and all will generally treat kids and have a lot ofpsychiatrist. It's also way more likely to be covered at a higher rate and in net work this way.
If you are willing to consider a neuroafferming therapist, therapyden is the resource I like to use to find a therapist., Look at Children's hospitals. Many areas have specific hospitals for children that house the specific specialties. I believe you would be looking for something like developmental-behavioral pediatrics., Personally, I think you'd be better off coordinating care yourself between the multiple disciplines because what you are asking for spans different medical fields so you'd need someone who has an excessive number of degrees and licenses for what you've asked for, and it's likely going to be very very hard to find and very expensive. Neuro and psyc are related, but different diciplines (MD, and requires at least 3 residencies cuz you also want a ped specialist) and the behavior is therapy (LSW) and not many people will have all that.
Another way to go would be a neuroafferming therapist, who can treat the behavioral issues and autism symptoms (so that's why I am recommending it) plus someone who can prescribe for the adhd.
Unless there is another reason you need a neurologist, you can get adhd treatment from a pediatrician or psychatrist. Neuros don't really treat adhd much anymore, and those that do that I've interacted with don't advertise it anymore becuase psychiatrists are mainly treating it now.
If you want adhd specific advice, you could add on an adhd coach (so it would be therapist, adhd coach, and someone to prescribe adhd meds with an MD). All of these are widely available, cuz adhd is very common, and all will generally treat kids and have a lot ofpsychiatrist. It's also way more likely to be covered at a higher rate and in net work this way.
If you are willing to consider a neuroafferming therapist, therapyden is the resource I like to use to find a therapist.
|
Looking for advice
|
My day care asked to discuss my son's progress and thinks he has some possible red flags for autism. He likes to spin things, loves fans, and is repeating himself alot (echolalia). He also isn't that interested in playing with the other kids.
However, he points, engages in joint communication, back and forth convo, makes eye contact, smiles and laughs frequently and loves to cuddle and hug. He knows all of the colors in both English and Spanish, can sing the alphabet (and lots of other songs), can count to 10. All in all he seems completely nuerotypical to me. The spinning doesn't interfere with other tasks and he also plays with things normally. While he repeats a lot he communicates very well and is fully potty trained. If any one has dealt with this or something similar I'd appreciate feedback. I have an appointment scheduled with the pediatrician Friday.
If he is on the spectrum, I know it will be ok and that's who is he is. But, I wanted to see if others in this sub had similar children and what they found out. More importantly, how did your child develop, what were challenges, and how did you handle them?
|
My son was just diagnosed within the past month (age 5, level 1 and combined ADHD) and our daycare provider actually brought it to our attention initially. At first, I was very much on the fence about testing, as our story was similar to your’s. There were a few areas of concern, but he was also our first born so we weren’t sure what to look for. As time has gone by, he has struggled with emotion regulation, impulse control, scripts frequently, and doesn’t engage in peer relationships often. While the past month has been challenging accepting the diagnosis, I’m so grateful to be his parent. He is hilarious, creative, and beyond brave. The diagnosis has given me more resources to help him on his journey. I’ll give you the advice that helped me the most: It is not my job to diagnose my child. It is my job to be the best parent to him possible., Oh he's 2.5 years old., My sons first signs of autism other than his obvious regression were spinning things, staring at the ceiling fans, flipping light switches, hand flapping, tip toe walking, and just loss of communication, appetite, and eye contact. His stimming was very obvious. He’s level 3 and the only person with autism I’ve ever spent much time around. I know nobody is the same. My friend had a child and they liked to spin things and stare at the fans and flip light switches, but he made good eye contact and had decent speech. They still got him checked out and he was not diagnosed with autism.
I feel it’s good to get your child evaluated just incase. My son is still young and just turned 4 and has been diagnosed since he was 1.5. Not much drastic changes, but there’s improvement if you look for it. He’s happy being him and that’s what matters. He’s in therapy (ABA, Speech, Food.) But where I’ve seen him progress the most is when he started Preschool at 3 and just being around other kids in a classroom setting. I was really worried and they were very lenient with him since he never really ever sat down or still while he is awake, constantly running back and forth or spinning in circles and his teachers allowed him to do that, thankfully. But now he sits like the other kids. His food selection, although still very picky, has improved. He doesn’t mind being around other people and his eye contact has also gotten much better. Still haven’t spoken words and still in diapers but we are getting there.
Hope all goes well for you and your son., Thank you! It's scary but I know everything will be ok., Thank you much for sharing your story! It makes me feel a lot better. No matter what he'll be ok., My son was just diagnosed within the past month (age 5, level 1 and combined ADHD) and our daycare provider actually brought it to our attention initially. At first, I was very much on the fence about testing, as our story was similar to your’s. There were a few areas of concern, but he was also our first born so we weren’t sure what to look for. As time has gone by, he has struggled with emotion regulation, impulse control, scripts frequently, and doesn’t engage in peer relationships often. While the past month has been challenging accepting the diagnosis, I’m so grateful to be his parent. He is hilarious, creative, and beyond brave. The diagnosis has given me more resources to help him on his journey. I’ll give you the advice that helped me the most: It is not my job to diagnose my child. It is my job to be the best parent to him possible., Oh he's 2.5 years old., My sons first signs of autism other than his obvious regression were spinning things, staring at the ceiling fans, flipping light switches, hand flapping, tip toe walking, and just loss of communication, appetite, and eye contact. His stimming was very obvious. He’s level 3 and the only person with autism I’ve ever spent much time around. I know nobody is the same. My friend had a child and they liked to spin things and stare at the fans and flip light switches, but he made good eye contact and had decent speech. They still got him checked out and he was not diagnosed with autism.
I feel it’s good to get your child evaluated just incase. My son is still young and just turned 4 and has been diagnosed since he was 1.5. Not much drastic changes, but there’s improvement if you look for it. He’s happy being him and that’s what matters. He’s in therapy (ABA, Speech, Food.) But where I’ve seen him progress the most is when he started Preschool at 3 and just being around other kids in a classroom setting. I was really worried and they were very lenient with him since he never really ever sat down or still while he is awake, constantly running back and forth or spinning in circles and his teachers allowed him to do that, thankfully. But now he sits like the other kids. His food selection, although still very picky, has improved. He doesn’t mind being around other people and his eye contact has also gotten much better. Still haven’t spoken words and still in diapers but we are getting there.
Hope all goes well for you and your son., Thank you! It's scary but I know everything will be ok., Thank you much for sharing your story! It makes me feel a lot better. No matter what he'll be ok., My son was just diagnosed within the past month (age 5, level 1 and combined ADHD) and our daycare provider actually brought it to our attention initially. At first, I was very much on the fence about testing, as our story was similar to your’s. There were a few areas of concern, but he was also our first born so we weren’t sure what to look for. As time has gone by, he has struggled with emotion regulation, impulse control, scripts frequently, and doesn’t engage in peer relationships often. While the past month has been challenging accepting the diagnosis, I’m so grateful to be his parent. He is hilarious, creative, and beyond brave. The diagnosis has given me more resources to help him on his journey. I’ll give you the advice that helped me the most: It is not my job to diagnose my child. It is my job to be the best parent to him possible., Oh he's 2.5 years old., My sons first signs of autism other than his obvious regression were spinning things, staring at the ceiling fans, flipping light switches, hand flapping, tip toe walking, and just loss of communication, appetite, and eye contact. His stimming was very obvious. He’s level 3 and the only person with autism I’ve ever spent much time around. I know nobody is the same. My friend had a child and they liked to spin things and stare at the fans and flip light switches, but he made good eye contact and had decent speech. They still got him checked out and he was not diagnosed with autism.
I feel it’s good to get your child evaluated just incase. My son is still young and just turned 4 and has been diagnosed since he was 1.5. Not much drastic changes, but there’s improvement if you look for it. He’s happy being him and that’s what matters. He’s in therapy (ABA, Speech, Food.) But where I’ve seen him progress the most is when he started Preschool at 3 and just being around other kids in a classroom setting. I was really worried and they were very lenient with him since he never really ever sat down or still while he is awake, constantly running back and forth or spinning in circles and his teachers allowed him to do that, thankfully. But now he sits like the other kids. His food selection, although still very picky, has improved. He doesn’t mind being around other people and his eye contact has also gotten much better. Still haven’t spoken words and still in diapers but we are getting there.
Hope all goes well for you and your son., Thank you! It's scary but I know everything will be ok., Thank you much for sharing your story! It makes me feel a lot better. No matter what he'll be ok., My son was just diagnosed within the past month (age 5, level 1 and combined ADHD) and our daycare provider actually brought it to our attention initially. At first, I was very much on the fence about testing, as our story was similar to your’s. There were a few areas of concern, but he was also our first born so we weren’t sure what to look for. As time has gone by, he has struggled with emotion regulation, impulse control, scripts frequently, and doesn’t engage in peer relationships often. While the past month has been challenging accepting the diagnosis, I’m so grateful to be his parent. He is hilarious, creative, and beyond brave. The diagnosis has given me more resources to help him on his journey. I’ll give you the advice that helped me the most: It is not my job to diagnose my child. It is my job to be the best parent to him possible., Oh he's 2.5 years old., My sons first signs of autism other than his obvious regression were spinning things, staring at the ceiling fans, flipping light switches, hand flapping, tip toe walking, and just loss of communication, appetite, and eye contact. His stimming was very obvious. He’s level 3 and the only person with autism I’ve ever spent much time around. I know nobody is the same. My friend had a child and they liked to spin things and stare at the fans and flip light switches, but he made good eye contact and had decent speech. They still got him checked out and he was not diagnosed with autism.
I feel it’s good to get your child evaluated just incase. My son is still young and just turned 4 and has been diagnosed since he was 1.5. Not much drastic changes, but there’s improvement if you look for it. He’s happy being him and that’s what matters. He’s in therapy (ABA, Speech, Food.) But where I’ve seen him progress the most is when he started Preschool at 3 and just being around other kids in a classroom setting. I was really worried and they were very lenient with him since he never really ever sat down or still while he is awake, constantly running back and forth or spinning in circles and his teachers allowed him to do that, thankfully. But now he sits like the other kids. His food selection, although still very picky, has improved. He doesn’t mind being around other people and his eye contact has also gotten much better. Still haven’t spoken words and still in diapers but we are getting there.
Hope all goes well for you and your son., Thank you! It's scary but I know everything will be ok., Thank you much for sharing your story! It makes me feel a lot better. No matter what he'll be ok.
|
Looking for reviews.
|
Our 2 year going on 3 year old has been diagnosed with autism, level 2. He's non verbal, extremely curious, and very active. The development ped also said he is an elopement risk. We are looking into the beds and Cubby bed comes to the top of the list however the woman working with my wife through insurance sent her some screen shots. One I can find myself, the child that got entrapped and suffocated but that seems like a once off because I cannot find anything else yet the woman also sent another one saying the child somehow damaged the technology hub area, got it's head in there and effectively hung themselves. Our child is very curious and we do not want to get something that may harm our child. Any clarification, recommendations, or alternatives would be appreciated and helpful.
|
If you can childproof the entire room a floor bed is zero risk for climbers. By choice I never did a crib I always did a floor bed and it’s great for a kids self regulation, instead of climbing or crying to get out they can roll around look at a few books but you do have to plan around any choking risk and secure the door In a way where they are safe and you can get in quick, those knob covers on the interiors worked for us, it’s been a decade so sorry I don’t have links but fur a floor bed you don’t have to do a frame, we didn’t. A tri fold foam works if you want to be able to fold it, and that’s great if you are switching from crib because you can have both available. Floor bed does mean kiddos room has to be free of choking risks and just a few things at that age (a book or two and a stuffy) gives them something to do without being too busy. I was only able to make this work because we have huge closets, but it’s a great habit to get into with ASD kids. Overwhelm is real and floor bed forces you to limit clutter = getting ahead of overwhelm., He chews on basically everything. That was my idea at first, a mattress on the floor and a "loony bin" room like you see in movies but he chews on everything and it would become a choking hazard. Plus we rent our house so securing the padding in any meaningful way is an issue. He has been co sleeping with us but he is starting to get too big, Securing everything for me, at this point, looks like giant ziplocks on a utility hook near the garage. You could get a trifold foam bed (they were popular in dorms) and remove the pulls from the zippers. Pretty hard to get yo the foam. Do the same with kiddo sleeping bag, get a full size mattress so you can lay down with him to sleep and sneak out. Around 2 we had a baby tent, moved to a smaller house. People thought having no bed was different but I styled it so it wasn’t too mental hospital lol., If you can childproof the entire room a floor bed is zero risk for climbers. By choice I never did a crib I always did a floor bed and it’s great for a kids self regulation, instead of climbing or crying to get out they can roll around look at a few books but you do have to plan around any choking risk and secure the door In a way where they are safe and you can get in quick, those knob covers on the interiors worked for us, it’s been a decade so sorry I don’t have links but fur a floor bed you don’t have to do a frame, we didn’t. A tri fold foam works if you want to be able to fold it, and that’s great if you are switching from crib because you can have both available. Floor bed does mean kiddos room has to be free of choking risks and just a few things at that age (a book or two and a stuffy) gives them something to do without being too busy. I was only able to make this work because we have huge closets, but it’s a great habit to get into with ASD kids. Overwhelm is real and floor bed forces you to limit clutter = getting ahead of overwhelm., He chews on basically everything. That was my idea at first, a mattress on the floor and a "loony bin" room like you see in movies but he chews on everything and it would become a choking hazard. Plus we rent our house so securing the padding in any meaningful way is an issue. He has been co sleeping with us but he is starting to get too big, Securing everything for me, at this point, looks like giant ziplocks on a utility hook near the garage. You could get a trifold foam bed (they were popular in dorms) and remove the pulls from the zippers. Pretty hard to get yo the foam. Do the same with kiddo sleeping bag, get a full size mattress so you can lay down with him to sleep and sneak out. Around 2 we had a baby tent, moved to a smaller house. People thought having no bed was different but I styled it so it wasn’t too mental hospital lol., If you can childproof the entire room a floor bed is zero risk for climbers. By choice I never did a crib I always did a floor bed and it’s great for a kids self regulation, instead of climbing or crying to get out they can roll around look at a few books but you do have to plan around any choking risk and secure the door In a way where they are safe and you can get in quick, those knob covers on the interiors worked for us, it’s been a decade so sorry I don’t have links but fur a floor bed you don’t have to do a frame, we didn’t. A tri fold foam works if you want to be able to fold it, and that’s great if you are switching from crib because you can have both available. Floor bed does mean kiddos room has to be free of choking risks and just a few things at that age (a book or two and a stuffy) gives them something to do without being too busy. I was only able to make this work because we have huge closets, but it’s a great habit to get into with ASD kids. Overwhelm is real and floor bed forces you to limit clutter = getting ahead of overwhelm., He chews on basically everything. That was my idea at first, a mattress on the floor and a "loony bin" room like you see in movies but he chews on everything and it would become a choking hazard. Plus we rent our house so securing the padding in any meaningful way is an issue. He has been co sleeping with us but he is starting to get too big, Securing everything for me, at this point, looks like giant ziplocks on a utility hook near the garage. You could get a trifold foam bed (they were popular in dorms) and remove the pulls from the zippers. Pretty hard to get yo the foam. Do the same with kiddo sleeping bag, get a full size mattress so you can lay down with him to sleep and sneak out. Around 2 we had a baby tent, moved to a smaller house. People thought having no bed was different but I styled it so it wasn’t too mental hospital lol., If you can childproof the entire room a floor bed is zero risk for climbers. By choice I never did a crib I always did a floor bed and it’s great for a kids self regulation, instead of climbing or crying to get out they can roll around look at a few books but you do have to plan around any choking risk and secure the door In a way where they are safe and you can get in quick, those knob covers on the interiors worked for us, it’s been a decade so sorry I don’t have links but fur a floor bed you don’t have to do a frame, we didn’t. A tri fold foam works if you want to be able to fold it, and that’s great if you are switching from crib because you can have both available. Floor bed does mean kiddos room has to be free of choking risks and just a few things at that age (a book or two and a stuffy) gives them something to do without being too busy. I was only able to make this work because we have huge closets, but it’s a great habit to get into with ASD kids. Overwhelm is real and floor bed forces you to limit clutter = getting ahead of overwhelm., He chews on basically everything. That was my idea at first, a mattress on the floor and a "loony bin" room like you see in movies but he chews on everything and it would become a choking hazard. Plus we rent our house so securing the padding in any meaningful way is an issue. He has been co sleeping with us but he is starting to get too big, Securing everything for me, at this point, looks like giant ziplocks on a utility hook near the garage. You could get a trifold foam bed (they were popular in dorms) and remove the pulls from the zippers. Pretty hard to get yo the foam. Do the same with kiddo sleeping bag, get a full size mattress so you can lay down with him to sleep and sneak out. Around 2 we had a baby tent, moved to a smaller house. People thought having no bed was different but I styled it so it wasn’t too mental hospital lol.
|
Losing family support due to autism?
|
My MIL texted me yesterday telling me she felt deprived of a normal grandma life. Because I have ASD 4 year old boy and my 2 year old daughter is starting to show signs of ASD (stopped talking at 18 months and slowly losing eye contact).
I was taken aback and felt extremely hurt. I texted back she already has a normal grandson and another grandbaby on the way (from her other son’s wife) so she can enjoy them.
My FIL, stepmother in law, BIL, and SIL (that wife who’s expecting) told me all 3 of my kids are not normal and I have to pull my oldest out of his original school and put him in special needs school, just because. I said no way he’s no match for special needs school he is excelling academically and it’s communication and social skills he’s lacking.
I feel like they’re picking on me about my kids. What am I going to do? I am losing support because of autism. If it’s anything else than autism I probably will still have support. I am depressed and my heart is hurting. I feel sorry for my older son and daughter.
I doomscrolled on Google and Reddit, and saw many instances of people losing support when they have autistic children. Is it true?? Do you feel like you’re losing support? Why? Do they fear autism?
Edit: Thank you for the supporting words and insights. She texted me again last night and it still doesn’t make me feel better. I feel like it’s damage control.
She said “Thanks for giving me a pause. It was quite a difficult time for me. As I thought over our comments, I realized I might have misused the word, deprivation. Pardon me. I should've chosen other words. Not actually taken away from me by you both. Just a dawning on me I'd not have the same opportunity & experience interacting with your 2 kids as I did with my sons. Yes, my grandparenting has been different & challenging, making me adapt. Autism is a new field for me. In no way I love your kids any less. Good night.”
I don’t like that my kids were perceived as difficult and a struggle. My daughter is actually very well behaved and polite. She can make gestures but just wouldn’t communicate with words. My son has temper tantrum sometimes and hyperfixation but he’s very smart. Just can’t communicate and poor social skills. I still feel like MIL thinks my kids were hard. She can go ahead have a easier time with her other grandson and new baby coming soon. What do you think of her message?
|
I am so sorry you're going through this! Honestly if you have a special needs child you should get more support from your family, not less. My in laws are amazing with my daughter and understand all her quirks. My family tries but sometimes they just don't get it and it's frustrating. Honestly your MILs comments sound very unkind. Its none of their business what school your kids are in as long as you and your husband agree its whats best for the kids. Sounds very stressful and id consider limiting contact at least for now. Your kiddos deserve a grandma who accepts them as they are!, What assholes., "And I feel like my children are missing out on having a normal grandmother experience. Seriously, why are you texting me this? Are you somehow expecting me to unautistic my children?"
But seriously, that's awful. I'm sorry.
She could be in mourning. In which case she's free to be but then she needs to woman up and keep going and supporting her grandchildren., I went through this, and it’s funny because I literally just commented about my experience on a different subreddit.
I think that special needs children will magnify the typical way that families operate/interact. If it’s a loving and healthy family structure, the family will rally around the child and the parents … because that’s how healthy people behave. If it was already a dysfunctional family/had unhealthy people/relationships, that will also be magnified. It’s common for unhealthy people to make it *all about them* instead of reflecting on the bigger picture. A normal grandparent would think ‘how can I offer support and ensure my child and grandchild are thriving?’ A narcissistic grandparent (for example) would think ‘this is not what *I* wanted! How dare they expect me to be inconvenienced???’
Big hugs OP. There’s a lot of us out there who have walked through this fire, and I feel like it’s not talked about enough. It’s bad enough fighting the school system for support and respect- but it’s so much more vile when we can’t even get it from our families., I can certainly relate. Even before the diagnosis my parents acted like my daughter was just too difficult for them. We live far away and visit once or twice a year and my parents wouldn't watch their granddaughter for an hour so I could go shopping without both kids. This is after basically raising my niece and doing free daycare for my sibling every day for a decade., A lot of people are assholes. Autism isn't a "visible" disability generally (there are major exceptions here: there are genetic disorders that can cause autism and also dysmorphology, however subtle it may be).
It makes it easy for family to assume the behavior is from bad parenting.
Your mother-in-law's message was completely inappropriate. It's OK to have boundaries. If you get messages like that again, I'd be very blunt: that's not appropriate to say to me..
It's ok to limit contact. I really don't have much of anything to do with my own ILs.. they see my kids a few times a year.
I was trying to get one of my son's last week to request more food with his AAC, my boneheaded father-in-law pipes in with, "say, 'I want to have more pizza, please!'" I looked at him, said, "No, we're not doing that," and turned back to my son to tell him how to request what he wanted.
Willful ignorance is a real problem. My in-laws choose to believe my kids' disability is largely my fault. They think my kids could be like them (really, most of that family is LSN/HF autistic) if we tried harder.
I still laugh - like, yeah, FIL. My kid who can barely speak is just gonna bust out with a 7 word sentence.
If people aren't a help to you, they're a hindrance, and it's OK to not go out of your way to have a relationship. You can find other people to fill those gaps., Yes I absolutely can relate. My mom and mother in law never watch my son. They are both retired and have nothing to do. And no other grand kids, however they act like I’m putting them through hell if I ask for help or ask for short babysitting hours. It’s absolutely devastating that the people you think you should be able to rely on the most aren’t there. I’m sorry you are going through that. It’s extremely hurtful., That’s messed up! My 4-year old grandson is autistic. Is he the occasional challenge? Of course? Do I wish he was a little more normal? Sure. But would I ever say I felt robbed of normal “grampy life?” Hell no. We do our best with him, and try to meet him where he is. He’s with us now, in fact: spent the night. He’s in “his” room playing with his clock.
I’m sorry your family is being so unsupportive. That’s just so heartbreaking., We went from have friends family and a social life to being completely alone, it's me my wife our kids and one of their old tharapist who will watch them so we can have a monthly date night, my mom won't stay for more than 3 hours, spent 3 days after an Alaskan cruise in Seattle to see my sister, she couldn't be bothered to do anything with my kids, I totally understand. My whole family is no support. It's "too hard" and "too much" for them to handle! It's really depressing and difficult. Mine are 14 and 12. So I've gotten used to it. But yeah it hurts! This role is very isolating!!😭, How awful for her! 🙄 sounds like the trash took itself out. I will gladly share my saint of a MIL with you., Next time anyone calls a human being “normal” say this.. “normal is a dryer setting and should never be a word describing a human being. And if being “normal” means being a judgmental asshole, I’d rather be not normal and be a caring person.”, That is abusive behaviour in my opinion. Cut all bonds., I would have been like, "And you're telling me this why? Do you want me to just wave a magic wand a reverse a genetic disorder that your genes contributed to so you can feel better? Grow up and learn how to cope with your own emotions without involving me." I deal with the same thing with my in-laws. They are largely uninvolved with both of my children, but especially my youngest with ASD. I don't even think he realizes he has a grandma and grandpa. My mother on the other hand adores him and he's always asking to "go to Grammy's house." It's their loss, your ILs and mine., I think at this rate, there are a few things you can do.
First is when people show you who they are, believe them. They’re showing you that they value your kids less than other kids. Got it, thanks.
As for the school comment, just to play the other side of the coin, maybe there’s a small chance the SIL meant he could possibly succeed more or be happier in a specialized school. (My son goes to one, and it’s the best choice for him…) HOWEVER, together with her other comments, that sounds unlikely, and she may be one of those people who thinks the disabled should go away and leave the normies alone to achieve without “messing up” their classrooms. So given that, as you figure out her motivations for these comments, believe what she’s saying too.
There was a good while when I really just had to put my head down and plow ahead in life mostly alone as a family for similar reasons. Your child’s goals and successes and failures are your North Star, and not anyone else’s topics to insult.
As for your MIL and her comment about being deprived of a normal grandmother experience - sorry but fuck her. Even if there is some legitimacy to her feelings because let’s face it, there’s a good degree to which many of us feel that way about our own motherhood, she should be able to read the room and figure out it’s not about her and that this small child is the focus, not her feelings about the situation. She needs a nice hot cup of shut the fuck up., You lose support because they have this fairy tale idea of what having a grandchild or niece or nephew is supposed to look like, and when you don't give them exactly what they want, they grieve and lash out.
Except its not your job to entertain their fantasies of what family is supposed to be. Your kids don't deserve this, and neither do you.
I would block the wenches and tell your husband to talk to them for any communication he might want. But calling my kids names is a quick way to no communication., We have one autistic child, one NT. No one openly says it, but no one wants to deal with our family. No one will babysit our kids. We get socially excluded. We are a family that needs more support, and we get less as a result. I'm guessing 90% of people reason this can relate.
Also your family sounds very self centered. I'm sorry to hear it, I'm so sorry. I have an grandson whos has ASD. I couldn't even imagine talking like that about him., Why do they think they’re losing support you’re asking?
I have two autistic kiddos. One level one, one level 3. No one can watch my kids for long. It exhausts the living shit out of them. They’re not used to it. My parents are very close to 80. We don’t have any other family members to watch them. Then if we hire a sitter for a vacation we have to worry they will be abused by them, pushing even a professional to their limits so we’ve never done it. We are 100% our kids “person”. They are stressed the fuck out without us. My husband and I in 10 years have had 14 days total overnight alone. None in the past 5.5 years. There’s no support because they need us and only us. For the first time we are biting the bullet and my parents are taking them in November. Only because now both are in school. It’s going to be scary for everyone involved. My daughter is already crying about just the talks we’ve had about it. There’s no support because even if someone is willing to help our kids don’t want to be with anyone else. They have support at school and therapy but parents are mentally shot. This groups empathy and advice is all I have. I am tired I don’t want to go socialize in an autism group weekly. I have no time for that shit.
I’m sorry your mother is being like this. My parents love their grandchildren. They just can’t do much for long due to age. Your mom sadly sounds like a narc. Sorry. If you have time the support groups might be good for you. We’re just not trusting of strangers to watch our kids for a long time so it is what it is. Every family is different. You need to tell your mom calmly and firmly how you feel. Don’t hold back. Just don’t yell. People shut down and don’t listen., In a way we have gained support and in a way we have lost it. It just depends on the person. For whatever reason, a lot of people do not perceive my son as autistic. He's Level 2, and it's so bleeding obvious to me and his Dad and all the professionals, but friends and family don't take care of him all day. The result is that they assume everything different about the way he does things is due to bad parenting. For example my husband's uncle said within my earshot that he'd been "poorly socialized." Even people who are supportive don't understand the day to day reality. And I think that makes me feel like I'm not getting support. Sometimes I feel like there's a piece of gauze between our little family and the rest of the world. We can see it and interact with it, but people can't access us. That sounds kind of insane and melodramatic, but that's how I feel., What does she want you to do? Give your babies up for adoption or trade them for “normal” ones so she can have her “Facebook grandma lifestyle”? Damn I’d be hurt too. What an insensitive and selfish thing to say to a mom.
That’s worse than them not being involved imo. At least for right now. My MIL doesn’t even know her infant grandson is severely delayed because she’s never met him and just isn’t in their life much. She is probably on the spectrum too. She sends great and very thoughtful gifts but like emotionally and physically is totally absent. I’d still take that over some twat telling me my babies were ruining her grandma dreams., Both grandmas suck for us. Just had a fight with my brother yesterday about never seeing my son. Turns out he was just upset about something I said and is now weird to spend with with us and punishing my son for some stupid beef we have. Love family. They suck., I didn’t lose support, I never had it. The autism diagnosis for one of my twins didn’t make a difference and it never would have.
On the one hand, appreciate the honesty, even if it hurts. They are allowed their feelings and they aren’t wrong. Special needs children aren’t easy to be around depending on the level of care they need, let alone raise. And although they are family, they shouldn’t be expected to handle the mental and physical challenges that special needs children require of their caregivers all the time. I may only have this bias due to never having support period in my lifetime though.
On the other hand, no one should be telling you how to raise your kids and what to do with them. You are their parent and you should be treated with respect when making decisions on their behalf. That is a boundary that should be made VERY early on. It is hard to build that later if clear communication isn’t stated from the start.
If they can’t speak to you respectfully and abide by the decisions you make for your children, it may be time to find a support group that you can attend in person and have minimal contact with your family. Autism doesn’t equal unworthy of love and it will be detrimental to you and your babies to continually be around people who treat all of you as less than. Accept the situation for what it is and act accordingly, even though it truly sucks., I noticed the same. Once we got my son diagnosed my family stayed away. It's heartbreaking. I know he's very difficult but he misses his nannie., I feel after 1 year old maybe 1.5 year old my in-laws family stopped coming over as much. Now that I have a new born they are back over a lot…weird, I am SO terribly sorry you are dealing with this! TBH-they are assholes! And they will be missing out on amazing grandchildren’s lives, and that is on THEM not you or your kids! You are a GREAT Mama and you don’t deserve this one bit!!
I have a feeling it’s the “unknown” for them that causes them to do or say those things. Instead of them taking a little bit of time to do some research on autism, they just automatically open their mouths and say stupid things that make them look ridiculously dumb.
You would think that they would want to support you even more since you are dealing with ASD and even just having 3 children you deserve a support system, but adding ASD to it makes it that much tougher and you NEED support from your family, no matter what!
It will be THEIR loss, not yours or your children’s loss-if they choose to be this way, then they can live with their decisions/words said and miss out on your children’s lives growing up. If they are your own family nearby, then maybe find a good group of other mom friends that can be that support system for you and don’t forget WE are ALL here for you! We can be your support system from afar, if you ever need someone to talk to or vent to, or ask questions to. We know it’s not easy, but we are all stronger mothers for this! :) I’m so sorry this is happening to you, you don’t deserve it AT ALL :(, I think it was poorly worded. We all have that moment of realization that our experience with our kids will not be typical of neurotypical parents. And in that moment we have sadness and sometimes dark thoughts and fears for the future. When our perception of what we thought parenthood would be is destroyed and filled with a new scary unknown. We each have lifted ourselves out of that space and adapted to our lives as parents of special needs children. I think what she sent you was a poorly worded expression of her realization that what she thought being a grandparent would be like is not going to happen. My mom never said anything like that to me but she had her moment of difficulty. But she learned and adapted. And now she helps me to raid my son after his mom had to leave from his life. She has learned and adapted. If she is willing to learn then her relationship to your kids may still be salvaged. And if she isn’t willing to learn and adapt then you remove her from your life., This post has my blood boiling, I am sorry you have to go through this. Pardon my French but they sound like a bunch of assholes. As if this is something you wanted or wished for.
Unfortunately I’ve learned majority of people who are not around Autism are so out of touch with it but that doesn’t excuse you to be ignorant.
Ive learned over the past few years you will lose a lot of family and friends due to Autism. But over time you will see the real ones who stay in your life and support you! Keep your head up, Sending love to you and your family!, I’m so incredibly sorry. Since everyone has already offered supportive and kind words, I will be a bit more blunt. I would literally never speak to my MIL again if she said that to me. What a terrible person. You don’t need people like that in your life, and neither do your kids., Sounds like you dodged a bullet.
Sure, it'd be ideal if they weren't assholes. But they are. Let them self-select their shit influence out of there., I'm so sorry you're having to deal with that. We all go through different emotions when things don't turn out how we think they will - with anything in life, not just kids.
But sounds like your family don't understand and are not accepting that this is something neither you or your kids have any control over.
It may be safer for you and your kids to keep them at arms length if they're just going to cause more grief and strife than help and support., My dad was like this in subtle ways.
No matter what he observed, nor what details I shared about our kid’s autism journey, he was always taken aback & doubtful that things were that hard on both our son & his parents.
When we first shared the news & details of our son’s autism diagnosis with my mom & dad, mom was understanding — she’d knowingly nod her head as we talked, as what she was learning answered questions & doubts she had while raising me as an undiagnosed child. My dad however took it personally — that both his grandson and possibly his son were on the spectrum was somehow a judgement of him.
When my mom passed away many years ago, I started growing more-distant with my father, as I continued to fill my life with more-sympathetic supporters & friends. My brother would regularly relay my dad’s judgements about my behavior, much of which was him continuing to take things personally vs. listening to my direct pleas for understanding & support., I hate to say this, as they are your family, but they sound like shitty people.
I'm not sure if my scenario is different, as my son is the only grandchild on both my and my husband's side of the family. As a result we don't really know anything else (and while the grandparents do, they raised kids a much longer time ago).
No one has ever suggested that we are raising our son wrong, or implied that he is too difficult. They all just want to spend time with him. While I am sure they were initially sad he wouldn't hug them, he now knows his grandparents well and loves them and does give them hugs and kisses., Ableism sucks. You can happily tell her to stuff her attitude and keep it away from you and your lovely kids. Your kids are being deprived of a grandma who loves, accepts, and supports them as they are. Her love, acceptancez and support is conditional-- they deserve better., My mom is ableist and makes everything about her. She’s about to be completely out of the picture soon. I’m not wasting my energy on her., Honestly... I find it's a blessing to keep those kinds of family members away. I loathe my MIL, she treated her son like an experiment and many other horrible things. So why would I want that around my kids?? No telling what she'd tell my daughter! Or try to do to my son!
I use the same reasoning, "you have 5 other grandkids... go play with them. Go visit them!" I love our peace and quiet at home., Your MIL sounds like a huge bitch. Who says something like that out of the blue?, Read this and commit it to memory.
You are not losing support because your kids have autism. You are loosing support because the people who should support you are self-centered, egotistical idiots who can only feel worth as a reflection from others perception of them.
Normal grandmother life: spoil kid with hugs and kisses, shower kid with junk food and toys, spend time making kid feel he is the center of the universe, proudly show off pictures, brag about accomplishments of grandchild. Gee, autism does not stop any of those things. It might change what is bragged about. But is it really worth bragging on a kid who barely has to crack a book to get straight A’s compared to a kid who works for weeks or months without giving up or complaining to finally reach a goal?
Oh, and tell your partner it is his responsibility to set and enforce boundaries with his family and you will deal with your family.
You do what is right for your kids to the best of your ability. If your family puts your kids or parenting down stop it right there, especially if it is said in front of the kids. You will find support as you reach out. Look for autism support groups in your local area. Your family may not support you, that is their choice, but it is up to to not let them undermine you by dictating your parenting strategies., And that’s where I would cut relations with them. I don’t care if they are “family”. My focus is to advocate and protect my son and daughter at all costs, that family calling your children “not normal” and she feels “deprived” is unkind and something a grandparent shouldn’t say about her grandchildren. There is no real “normal” and it sounds like your little boy is kicking butt in school!!, It is sad to see some family members see love as conditioned on lacking disability., No one has said anything, but I can feel the disappointment from my mom. It feels like it’s more about competition within Facebook. Which is even sadder. I feel resented. But maybe not, idk, As a mom, i relate to the grandma mourning or feeling ripped off from the grandchildren experience she thought she’d have - I still have intrusive thoughts like that when it’s challenging. But she should vent to a therapist, not the children’s mother.
My kids grandparents also have ‘normal’ grandchildren from their other grown kids. They’re so simple and boring. Those kids barely move, obviously they’re easier for senior citizens. Those kids are like boiled potatoes. If you prefer boiled potatoes go dote on the normies. If you like potato vodka come to my house., Its unbelievably hurtful that she said that to you. How does she think it might feel as a mother losing out on having a neuro typical child?
I know how it feels and it absolutely horrendous that she said that to you. I would write her a message absolutely ripping her a new one and laying it all out how you feel. What have you got to loose?, My in-laws basically disappeared after my kiddo’s diagnosis, from weekly visits to bi-monthly if that. My father will visit once every year and a half or so and play with his phone on my couch for days then brag on Facebook about how involved he is with my child, typical boomer behavior, It’s hard to not let them have it. I know my child is upset by the grandparent relationship that is no longer, I wish it was different but I’m proud of my family and the strides we make without them. It’s their loss as far as I’m concerned. Sorry for story time op you are not alone!, While grandparents can have a positive influence in the lives of our children, I don’t mourn the loss of the relationship between them and ANY of our children, NT or ND, period, full stop. We’ve chosen our village of support and love. It’s they who have lost out on the love of our children. Sending you so much strength OP, for you and your family, you are supported HERE!, Sounds like a lot of judgement, and not much understanding.
They're not entitled to an opinion on something, irrespective of whether they understand it. The fact that they don't makes it worse.
Instead of spouting random hurtful crap at you, perhaps they should take the time to read up on autism, learn how to better interact and communicate with your children.
If they don't want to contribute to your children's lives in a positive, well thought out, meaningful way, then your children may be better off without them.
It honestly sounds like your children having autism is shattering her idea of what it means to be a grandmother. She may find it grating being compelled to learn new ways to be a supportive and caring family member., Girl fk them people.
I would never want my kids around them anyways. Time to build true family for them.
I'm sorry, can't think of a PC way to say it., Yup, it’s a thing. My family hasn’t seen my young kids in 2 years. They think my kids are naughty or spoiled. The doctors are idiots. The only thing wrong with them are their bad parents who just need to spank some sense into the kids., I had a lot of people have opinions, but they did not want to help, hands on. At the end of the day, its best to build a cocoon fill it with supportive positive hands on people. I had to move away from everyone to find peace. You are your kids biggest advocate. Its ok to cry, but, it will pay off. My son is 18, I have challenges, but, I do the best I can, I don't know when you posted this but may I share with you my experience? When my daughter was 10 months, we noticed signs (driven by a motor, lack of eye contact, no speech)
After several years of fighting for her, we were given the diagnosis "pervasive development delay" in today's terms- autism. This was 2006. We couldn't keep my husbands parents away from my daughter prior to this. The word autism came out and POOF! Not a little either, all at once. From then on, excuse after excuse of why they couldn't visit. From the dog, to the road is dirty (we lived on a dirt road at the time) their last visit was when my daughter was 6? I believe. Anyway, since, it has been my husband and I. No long weekends, no nights at grandmas so mom and dad can rest. None of that. She is now 18 and refers to my mother in law by her first name. My father in law passed away not having the joy of seeing his grandchild grow up.
The 'nail' in the coffin? When they had my daughters name scrawled on their grave "loving grandparents of:"
I wanted to barf! Who are they trying to fool?
Anyway, my point, yes! You will probably face comparisons to your sister in laws children, other family members children etc. You will hear their input on things they don't understand. For lack of better words, they will piss you off to a point you will actively be trying to "make up" for their behaviors to your kids. At one point, my MIL happily called me to tell me she had been reading some book on dieting for herself and discovered " autism is from shaken baby syndrome or drug abuse, so which one was it" my response, was to hang up. I wasn't going to dignify her nasty comments with an answer! We were neither abusive or drug users!
The best advice I can give as a parent who is hurt by 18 years of this very issue, be glad you have more than one child. They will be eachothers family, best friends and you will be their everything! If your MIL chooses to be in your children's lives, allow it. If she doesn't? Don't force the issue. You will only hurt yourself if you do. Love your kids, they are as special and original as the seashells that wash up along the shore! Are some of those shells different? Absolutely, but are all of them perfect? Yes! In their own special ways. May you and your babies be Blessed my friend!, Totally have zero support only karma awaits for those people who has invalidated me and my child, As a grandmother of an asd boy I’m so sorry you’re going through this. Admittedly it was difficult accepting he was autistic, even though I was the first person in my family to notice his regression at 18 months. However, by learning and researching and being included in his development it has opened my eyes a lot. I had only heard the word ‘autism’ but never knew exactly what it was. I look after my grandson every other weekend to give his mum and dad a break but also so I can have a relationship with him. Yes, he drives me nuts sometimes when he won’t do as he’s told but I’ve educated my extended family on how to deal with this. Before he was diagnosed I used to lose sleep over what could possibly be wrong. I suspect it is difficult for them to accept and they’re not dealing with it properly. Now that He’s slowly becoming verbal and his receptive language has improved in the last year all the work and effort is satisfying. Maybe they’ll come around, maybe not but as long as you continue to champion him then that’s what matters. ❤️, Ok so it sounds like they had a different idea of what their life with your children would be like and now it isn’t turning out that way because the ASD and their frustrated and looking to place blame.
Almost everyone I know was like this at first until they spent some real time with my kids and saw that they were different.
My MIL begged us to let her take my oldest son to church and when we let her, the next day he went to school and told people that if they didn’t behave themselves they would go to hell.
I got a call from the school (understandably) asking that we make sure he keeps religious beliefs out of school time…. *sighes*
Her plan was to drag him to church with her damn near every weekend even though We don’t go at all. We had to call her and gently let her know that taking to him to church was now off the table for the time being because of what he did at school. She was also mortified and didn’t know he would react that way. This was before when she didn’t believe he had it. It was a pivotal moment for her and for us…
Then with our younger boy who is completely non verbal, I was told that it was my fault that he didn’t talk enough and that I should talk to him more even though I did!
My point is that from the outside looking in, it’s always easy to blame even the best parents (which there’s no such thing as) when the child is behaving in a way that’s not what others see as socially norm. But they don’t know your kids as well as you do, and you don’t have to prove yourself to them. ; )
Give them time, continue to do what your doing for your child, and if you want your child to have at least some memories of their grand parents then try to keep things civil and they may come around once you have an official diagnosis (if you don’t already) and I find that telling my in-laws about some of the things the kids do and some of things that have happened at school seems to get them to see that even through the eyes of others they DO need special accommodations and should be treated as such. And get with the program.
I’m so sorry you are going through this and I’ve been there. I’ve found that just time and allowing them to see things for what they are can sometimes be the best medicine., Its not a support to begin with if they are like that. Its not because of autism but bec they are pieces of trash people. As if it's your fault or your kids fault that they fell on the spectrum. Just focus on your kids and yourself, look for a support group that really understand your situation and accept you guys. You are never alone mama. You are doing great 🌿, I was the scapegoat growing up. When I had the first grandchild, I was the favorite, and my son was spoiled with love. Now my parents ignore me existence and always tell me there is something wrong with him and act like I have abused my child into autism....because apparently that is a thing.
And before anyone asks, I have been no contact withbmy family and they don't reach out, Sounds like your family are ableist shits. Inadvertently! Not necessarily because they are bad people. They need to be educated about who your kids are, what your kids need, and why your kids are awesome and just as deserving of love and relationships with their grandparents as anyone else.
With my kids’ grandparents, we walked them through the evaluations and assessments, explained how their brains work, explained how they express themselves. Bought them books and everything. Thankfully, they were open to learning, and now the feel included and have bonded better with my kids. Not everyone will be open to this, but hopefully your parents are! But you will need to walk them through it. Takes more work and more patience from you (as if you need that!) but in the long run I think it can pay dividends for your kids., Oh my gosh. I feel sorry for your kid’s grandmother! There is so much love in your children. I pray for protection of you and your kids that rejection will not harm any of you. Your children are blessed !🦋🙏🏼, My dad & mom and my kids dads family act like our kids don’t exist. So yeah .., you do lose support, I agree.
As if kids with ASD are worth less than other kids.
I get that they can be difficult to be around especially on bad days, but seriously - sit down and listen to my kid talk about her interests and she will reward you with knowledge and love.
My parents now have 3 ND grandkids, and how they act around them have only changed to reflect what the kids need. Which is how it should be., Legit I hope karma gets these people back, Total asshole move. If MIL feels this way, and she’s working through some pity party, she’s chosen the absolute wrong person to express those feelings to. Just completely heartless, and her follow up was so void of any feeling., You nailed it because my mom literally makes it about her because she was already a narcissist to begin with., Man i had to google this thread because my mil was telling me no two year old can talk sentences. My girl loses words but says new ones every day. Shes mad i put my daughter in speech therapy. Anything i say about my sons autism or her speech therapy is insulting. Its so gross . Im tired of it. I am distancing myself right now. I have no one that is supportive except my husband., Your situation sounds a lot like mine. My son is "too much" for my parents, but they've watched their other grandkids for days at a time, often with 3 or 4 grandkids over at once for years. And my parents had 5 kids in 7 years before the grandkids. But my one son is too much for them to watch for a few hours once a year or so. It sucks so much. I feel you., Yes, I relate a lot. When my kids were little (before my daughter, now 11, really started showing noticeable signs of ASD) my MIL would fly out to see them all the time, watch them all the time, ask about them all the time, send outfits, etc etc. My daughter is her only granddaughter.
Now she has zero relationship with her because she’s not a “girly” girl, she doesn’t have an interest in anything that my MIL does, she doesn’t make regular eye contact, etc etc. And my MIL never comes to see my kids or asks about them. She has two younger grandsons much closer geographically and they get all the attention.
It is very hurtful and noticeable to me at least. I try not to think about it, but when I do, I want to cry., I can relate. Other than my wonderful MIL we have basically nobody to help. It's sad, but you do what you need to do for your kids, Mines 12 too are you homeschooling ? … the no support is ridiculous this is exactly my child’s family, We're the same way. It's sad. People who need the support and help are never the ones that get it. Soldier on I guess. All you can do, We are the same my family even went on trips together and took my non autistic child and while the other one gets left out I’m putting an end to that this year, How is an infant severely delayed?, That’s 100% my experience too. It’s so painful growing up like that- and then it just reopens old wounds watching it happen to your own kids. I finally tapped out to be honest. I just couldn’t handle it anymore., I'm so sorry. That's so shitty., Yep same. When mine were babies they showed more love and interest.💔, In his milestones and he is regressing in previously met ones. Not autism that we know of, probably something else neurological. I don’t sub here for him but my other kid and myself., Yup, once my mom said my son was a brat and it was hard to like him was my last straw.
|
Losing my mind with potty training
|
This is our 3rd time trying to potty train my son. He's now 4.5yo. I read the books, I did the preparation. I decorated the bathroom, I got a stand for his feet, we got toys just for in the potty. We said goodbye to diapers and bought his special underwear. I have treats for reinforcement, but I don't know if we'll ever even get to that point.
It's 10am and he's peed twice in his underwear and once on the floor (he's been up since 3am). He'll play on the bathroom floor but scream when he has to sit on the potty. He's holding his pee until he's red in the face and crying and grinding his teeth like a bandsaw.
He's done more difficult things than this; I just don't understand. I'm literally crying and breaking down because it just feels so impossible. Why can't he just get this one thing? Even if it was just one pee, once. Anything. I feel so hopeless.
|
Just want you to know you're not alone. I've got a 5.5 year old and we still don't feel like we're all that close. He's progressed in a million other areas but this one we're just stuck. We keep trying but we're trying to do it at his pace...at this point it still doesn't feel like he understands everything enough for us to make much progress., Every kid is different, but if it’s becoming a battle, it might be worth backing off for a bit and then trying again later. Our kid was just not ready when we started, and pushing it super hard made him more anxious about it. We’re still working on it, it’s been a process!, The ONLY thing that worked for my son was a Little ADVENTures Potty Training advent calendar that I purchased from Amazon. It is like an advent calendar and a sticker chart. My son loved it, and it turned potty time completely around for us. Well, that, and I rewarded him with ALOT of Oreos, LOL. We potty trained via gratuitous bribery., Potty training is hard! You’re not alone. I recently just went through a potty is scary phase but I found the root (the potty seat was uncomfortable) so I got one of those seats with the toddler seat built in.
Maybe there’s some sort of aversion? Have you tried different seats? Maybe a urinal?, Look up "pathological demand avoidance". Sounds like your kid may be living into that. The good news is that there are ways to address it.
https://childmind.org/article/pathological-demand-avoidance-in-kids/, My son is 4,5 and can really good notice when he needs, what he needs and how to hold back until he wants to do potty. But not on potty, just diapers. It means it has nothing to do with sensory issues or lack of body control: he really says he doesn't want to go on potty. We tried to trained that and it resulted in bladder infection. Now we just completely let it go and I am amazed how good he is in knowing he body needs. He declared he is gonna go on potty when he turns 5 and I am sure he is gonna do it overnight. Maybe yours is simply not ready yet., We are currently day 4 of potty training my 3.5 year old non verbal boy. Today he had 14 wet pants and 10 wee’s on the toilet. It’s a process but we are preserving. We use tablet time with baby shark to get him to sit and wait on the toilet, then he gets a milky way magic star chocolate if he pee’s in the toilet.
We can do this!, does he have an ipad or something he can play on while sitting on the potty?, My son seemed terrified of the toilet at first. We bought one of the potty seat inserts and he didn’t like that either lol.
I just let him move and drag the seat insert around the house and eventually he started sitting on it on the couch ( while he still had his pull up on). When he finally wasn’t afraid of it we started letting him put it on the the toilet. Practice flushing the toilet. Then when he would finally start sitting on the toilet we would have special books we would read while he was there . Fortunately for us once he started using the toilet he never went back to going in his diaper/ pull up.
For preparation we read pretty much every night for months before he would actually sit on the seat.
Books we loved:
P is for potty Elmo book.
And Potty by Leslie Patricelli book
Good luck! You’re doing a great job!, try running a tap in front of him. seeing running water gets child to pee., Completely understand what your going thru- my son last year started kindergarten (now 1st grader) and he would have days of success and days of accidents; partially non-verbal and would either say something very last minute and either make it or have an accident standing on the playground or in class, not saying anything to his aid..
We were fortunate enough to have an amazing kindergarten teacher and aids that worked with him and gave us some great ideas. We found social stories and making them fun and easy to understand really helped. We also made diagrams that we have at each household. As he got more comfortable with the language and diagrams, and of course incorporating reward program ( some type of food or activity he wanted to do) brought a lot of success.
Over summer, my boyfriend and I really worked on getting him comfortable at home and out& about communicating, asking him and making more of a schedule to use the bathroom.. you also know the signs, mannerisms when your kid has to go to the bathroom 🥲 good days and sometimes fights but just reminding him it’s okay and you are here for them is so important. Not getting upset if an accident happens but discussing it and how we can change the uncomfortable moments. His dad and I see differently on pull-ups and I really put in more effort of potty at home and starting night time training, which is an ongoing process. Many nights of lil sleep for our household, changing sheets multiple times, changing car seats, all the things that come with potty training.. but after 4 months, we started to get somewhere , which was exciting! Although most times he’s pretty much sleep walking, we are definitely almost getting to a point where he’s somewhat lucid and acknowledges using bathroom and quickly gets back into bed and back to sleep..
He started first grade this year at a new school, which def brought challenges, along with updating his IEP.. the accidents started again during the day at school.. but more success overnight. After getting his IEP updated and getting him into the correct classroom with an amazing teacher who understands his needs and what works for him, I can’t say this enough, social stories and encouraging parental support are going to be your best friends and get you thru!!! It takes reminders and communication, but he wakes up with us most mornings dry, he still has a potty dance and we sometimes have to tell him to use the bathroom and other times he will just run to restroom and talk out his steps of using the bathroom independently.
Im sorry for the rambling but want to try and be as much help and support as I can. Us parents gotta stick together and work together !! Willing to share social stories and diagrams we use if would help but hope I provided some kind of help and thank you for the post. Always helps knowing you aren’t the only person going thru something ♥️♥️🙌, I think with a lot of things, if it’s a battle, it’s not going to work out well. It helps to get to a place in your mind where you are not so upset about using the potty or not. Maintaining a neutral face and voice can be very helpful. It’s not easy of course.
I got the impression at one point that cheering my son on was not helping - I’ve read other people’s stories who had a similar experience. Their kid would rather have a low key thumbs up than tons of praise. That resonated with me, because I’m like that too. That’s where having a more blasé attitude can help. Like peeing in the potty is the last thing on your mind. Food is the same way.
Autistic kids are looking for any way they can find to control their environment - don’t play in to it. I find it can also help to act like whatever thing you’re trying to do is coming from somewhere else - not my idea, that’s just the rules. 🤷♀️ Makes it easier for them to accept they can’t take their Switch to school, etc., I know many kids don’t, but we had success with sticker charts (specifically for pooping in the potty, which came about 4-5 months after peeing successfully)., I have had to reconcile myself to gratuitous bribery with my youngest (not autistic) for potty training, sometimes it’s just what is needed 😆, Yup, my son may have that. Its ROUGH., I typed out a big response, but it was long winded
I will just say that pee/poo potty charts with stickers and rewards worked like magic for my son., Just want you to know you're not alone. I've got a 5.5 year old and we still don't feel like we're all that close. He's progressed in a million other areas but this one we're just stuck. We keep trying but we're trying to do it at his pace...at this point it still doesn't feel like he understands everything enough for us to make much progress., Every kid is different, but if it’s becoming a battle, it might be worth backing off for a bit and then trying again later. Our kid was just not ready when we started, and pushing it super hard made him more anxious about it. We’re still working on it, it’s been a process!, The ONLY thing that worked for my son was a Little ADVENTures Potty Training advent calendar that I purchased from Amazon. It is like an advent calendar and a sticker chart. My son loved it, and it turned potty time completely around for us. Well, that, and I rewarded him with ALOT of Oreos, LOL. We potty trained via gratuitous bribery., Potty training is hard! You’re not alone. I recently just went through a potty is scary phase but I found the root (the potty seat was uncomfortable) so I got one of those seats with the toddler seat built in.
Maybe there’s some sort of aversion? Have you tried different seats? Maybe a urinal?, Look up "pathological demand avoidance". Sounds like your kid may be living into that. The good news is that there are ways to address it.
https://childmind.org/article/pathological-demand-avoidance-in-kids/, My son is 4,5 and can really good notice when he needs, what he needs and how to hold back until he wants to do potty. But not on potty, just diapers. It means it has nothing to do with sensory issues or lack of body control: he really says he doesn't want to go on potty. We tried to trained that and it resulted in bladder infection. Now we just completely let it go and I am amazed how good he is in knowing he body needs. He declared he is gonna go on potty when he turns 5 and I am sure he is gonna do it overnight. Maybe yours is simply not ready yet., We are currently day 4 of potty training my 3.5 year old non verbal boy. Today he had 14 wet pants and 10 wee’s on the toilet. It’s a process but we are preserving. We use tablet time with baby shark to get him to sit and wait on the toilet, then he gets a milky way magic star chocolate if he pee’s in the toilet.
We can do this!, does he have an ipad or something he can play on while sitting on the potty?, My son seemed terrified of the toilet at first. We bought one of the potty seat inserts and he didn’t like that either lol.
I just let him move and drag the seat insert around the house and eventually he started sitting on it on the couch ( while he still had his pull up on). When he finally wasn’t afraid of it we started letting him put it on the the toilet. Practice flushing the toilet. Then when he would finally start sitting on the toilet we would have special books we would read while he was there . Fortunately for us once he started using the toilet he never went back to going in his diaper/ pull up.
For preparation we read pretty much every night for months before he would actually sit on the seat.
Books we loved:
P is for potty Elmo book.
And Potty by Leslie Patricelli book
Good luck! You’re doing a great job!, try running a tap in front of him. seeing running water gets child to pee., Completely understand what your going thru- my son last year started kindergarten (now 1st grader) and he would have days of success and days of accidents; partially non-verbal and would either say something very last minute and either make it or have an accident standing on the playground or in class, not saying anything to his aid..
We were fortunate enough to have an amazing kindergarten teacher and aids that worked with him and gave us some great ideas. We found social stories and making them fun and easy to understand really helped. We also made diagrams that we have at each household. As he got more comfortable with the language and diagrams, and of course incorporating reward program ( some type of food or activity he wanted to do) brought a lot of success.
Over summer, my boyfriend and I really worked on getting him comfortable at home and out& about communicating, asking him and making more of a schedule to use the bathroom.. you also know the signs, mannerisms when your kid has to go to the bathroom 🥲 good days and sometimes fights but just reminding him it’s okay and you are here for them is so important. Not getting upset if an accident happens but discussing it and how we can change the uncomfortable moments. His dad and I see differently on pull-ups and I really put in more effort of potty at home and starting night time training, which is an ongoing process. Many nights of lil sleep for our household, changing sheets multiple times, changing car seats, all the things that come with potty training.. but after 4 months, we started to get somewhere , which was exciting! Although most times he’s pretty much sleep walking, we are definitely almost getting to a point where he’s somewhat lucid and acknowledges using bathroom and quickly gets back into bed and back to sleep..
He started first grade this year at a new school, which def brought challenges, along with updating his IEP.. the accidents started again during the day at school.. but more success overnight. After getting his IEP updated and getting him into the correct classroom with an amazing teacher who understands his needs and what works for him, I can’t say this enough, social stories and encouraging parental support are going to be your best friends and get you thru!!! It takes reminders and communication, but he wakes up with us most mornings dry, he still has a potty dance and we sometimes have to tell him to use the bathroom and other times he will just run to restroom and talk out his steps of using the bathroom independently.
Im sorry for the rambling but want to try and be as much help and support as I can. Us parents gotta stick together and work together !! Willing to share social stories and diagrams we use if would help but hope I provided some kind of help and thank you for the post. Always helps knowing you aren’t the only person going thru something ♥️♥️🙌, I think with a lot of things, if it’s a battle, it’s not going to work out well. It helps to get to a place in your mind where you are not so upset about using the potty or not. Maintaining a neutral face and voice can be very helpful. It’s not easy of course.
I got the impression at one point that cheering my son on was not helping - I’ve read other people’s stories who had a similar experience. Their kid would rather have a low key thumbs up than tons of praise. That resonated with me, because I’m like that too. That’s where having a more blasé attitude can help. Like peeing in the potty is the last thing on your mind. Food is the same way.
Autistic kids are looking for any way they can find to control their environment - don’t play in to it. I find it can also help to act like whatever thing you’re trying to do is coming from somewhere else - not my idea, that’s just the rules. 🤷♀️ Makes it easier for them to accept they can’t take their Switch to school, etc., I know many kids don’t, but we had success with sticker charts (specifically for pooping in the potty, which came about 4-5 months after peeing successfully)., I have had to reconcile myself to gratuitous bribery with my youngest (not autistic) for potty training, sometimes it’s just what is needed 😆, Yup, my son may have that. Its ROUGH., I typed out a big response, but it was long winded
I will just say that pee/poo potty charts with stickers and rewards worked like magic for my son., Just want you to know you're not alone. I've got a 5.5 year old and we still don't feel like we're all that close. He's progressed in a million other areas but this one we're just stuck. We keep trying but we're trying to do it at his pace...at this point it still doesn't feel like he understands everything enough for us to make much progress., Every kid is different, but if it’s becoming a battle, it might be worth backing off for a bit and then trying again later. Our kid was just not ready when we started, and pushing it super hard made him more anxious about it. We’re still working on it, it’s been a process!, The ONLY thing that worked for my son was a Little ADVENTures Potty Training advent calendar that I purchased from Amazon. It is like an advent calendar and a sticker chart. My son loved it, and it turned potty time completely around for us. Well, that, and I rewarded him with ALOT of Oreos, LOL. We potty trained via gratuitous bribery., Potty training is hard! You’re not alone. I recently just went through a potty is scary phase but I found the root (the potty seat was uncomfortable) so I got one of those seats with the toddler seat built in.
Maybe there’s some sort of aversion? Have you tried different seats? Maybe a urinal?, Look up "pathological demand avoidance". Sounds like your kid may be living into that. The good news is that there are ways to address it.
https://childmind.org/article/pathological-demand-avoidance-in-kids/, My son is 4,5 and can really good notice when he needs, what he needs and how to hold back until he wants to do potty. But not on potty, just diapers. It means it has nothing to do with sensory issues or lack of body control: he really says he doesn't want to go on potty. We tried to trained that and it resulted in bladder infection. Now we just completely let it go and I am amazed how good he is in knowing he body needs. He declared he is gonna go on potty when he turns 5 and I am sure he is gonna do it overnight. Maybe yours is simply not ready yet., We are currently day 4 of potty training my 3.5 year old non verbal boy. Today he had 14 wet pants and 10 wee’s on the toilet. It’s a process but we are preserving. We use tablet time with baby shark to get him to sit and wait on the toilet, then he gets a milky way magic star chocolate if he pee’s in the toilet.
We can do this!, does he have an ipad or something he can play on while sitting on the potty?, My son seemed terrified of the toilet at first. We bought one of the potty seat inserts and he didn’t like that either lol.
I just let him move and drag the seat insert around the house and eventually he started sitting on it on the couch ( while he still had his pull up on). When he finally wasn’t afraid of it we started letting him put it on the the toilet. Practice flushing the toilet. Then when he would finally start sitting on the toilet we would have special books we would read while he was there . Fortunately for us once he started using the toilet he never went back to going in his diaper/ pull up.
For preparation we read pretty much every night for months before he would actually sit on the seat.
Books we loved:
P is for potty Elmo book.
And Potty by Leslie Patricelli book
Good luck! You’re doing a great job!, try running a tap in front of him. seeing running water gets child to pee., Completely understand what your going thru- my son last year started kindergarten (now 1st grader) and he would have days of success and days of accidents; partially non-verbal and would either say something very last minute and either make it or have an accident standing on the playground or in class, not saying anything to his aid..
We were fortunate enough to have an amazing kindergarten teacher and aids that worked with him and gave us some great ideas. We found social stories and making them fun and easy to understand really helped. We also made diagrams that we have at each household. As he got more comfortable with the language and diagrams, and of course incorporating reward program ( some type of food or activity he wanted to do) brought a lot of success.
Over summer, my boyfriend and I really worked on getting him comfortable at home and out& about communicating, asking him and making more of a schedule to use the bathroom.. you also know the signs, mannerisms when your kid has to go to the bathroom 🥲 good days and sometimes fights but just reminding him it’s okay and you are here for them is so important. Not getting upset if an accident happens but discussing it and how we can change the uncomfortable moments. His dad and I see differently on pull-ups and I really put in more effort of potty at home and starting night time training, which is an ongoing process. Many nights of lil sleep for our household, changing sheets multiple times, changing car seats, all the things that come with potty training.. but after 4 months, we started to get somewhere , which was exciting! Although most times he’s pretty much sleep walking, we are definitely almost getting to a point where he’s somewhat lucid and acknowledges using bathroom and quickly gets back into bed and back to sleep..
He started first grade this year at a new school, which def brought challenges, along with updating his IEP.. the accidents started again during the day at school.. but more success overnight. After getting his IEP updated and getting him into the correct classroom with an amazing teacher who understands his needs and what works for him, I can’t say this enough, social stories and encouraging parental support are going to be your best friends and get you thru!!! It takes reminders and communication, but he wakes up with us most mornings dry, he still has a potty dance and we sometimes have to tell him to use the bathroom and other times he will just run to restroom and talk out his steps of using the bathroom independently.
Im sorry for the rambling but want to try and be as much help and support as I can. Us parents gotta stick together and work together !! Willing to share social stories and diagrams we use if would help but hope I provided some kind of help and thank you for the post. Always helps knowing you aren’t the only person going thru something ♥️♥️🙌, I think with a lot of things, if it’s a battle, it’s not going to work out well. It helps to get to a place in your mind where you are not so upset about using the potty or not. Maintaining a neutral face and voice can be very helpful. It’s not easy of course.
I got the impression at one point that cheering my son on was not helping - I’ve read other people’s stories who had a similar experience. Their kid would rather have a low key thumbs up than tons of praise. That resonated with me, because I’m like that too. That’s where having a more blasé attitude can help. Like peeing in the potty is the last thing on your mind. Food is the same way.
Autistic kids are looking for any way they can find to control their environment - don’t play in to it. I find it can also help to act like whatever thing you’re trying to do is coming from somewhere else - not my idea, that’s just the rules. 🤷♀️ Makes it easier for them to accept they can’t take their Switch to school, etc., I know many kids don’t, but we had success with sticker charts (specifically for pooping in the potty, which came about 4-5 months after peeing successfully)., I have had to reconcile myself to gratuitous bribery with my youngest (not autistic) for potty training, sometimes it’s just what is needed 😆, Yup, my son may have that. Its ROUGH., I typed out a big response, but it was long winded
I will just say that pee/poo potty charts with stickers and rewards worked like magic for my son., Just want you to know you're not alone. I've got a 5.5 year old and we still don't feel like we're all that close. He's progressed in a million other areas but this one we're just stuck. We keep trying but we're trying to do it at his pace...at this point it still doesn't feel like he understands everything enough for us to make much progress., Every kid is different, but if it’s becoming a battle, it might be worth backing off for a bit and then trying again later. Our kid was just not ready when we started, and pushing it super hard made him more anxious about it. We’re still working on it, it’s been a process!, The ONLY thing that worked for my son was a Little ADVENTures Potty Training advent calendar that I purchased from Amazon. It is like an advent calendar and a sticker chart. My son loved it, and it turned potty time completely around for us. Well, that, and I rewarded him with ALOT of Oreos, LOL. We potty trained via gratuitous bribery., Potty training is hard! You’re not alone. I recently just went through a potty is scary phase but I found the root (the potty seat was uncomfortable) so I got one of those seats with the toddler seat built in.
Maybe there’s some sort of aversion? Have you tried different seats? Maybe a urinal?, Look up "pathological demand avoidance". Sounds like your kid may be living into that. The good news is that there are ways to address it.
https://childmind.org/article/pathological-demand-avoidance-in-kids/, My son is 4,5 and can really good notice when he needs, what he needs and how to hold back until he wants to do potty. But not on potty, just diapers. It means it has nothing to do with sensory issues or lack of body control: he really says he doesn't want to go on potty. We tried to trained that and it resulted in bladder infection. Now we just completely let it go and I am amazed how good he is in knowing he body needs. He declared he is gonna go on potty when he turns 5 and I am sure he is gonna do it overnight. Maybe yours is simply not ready yet., We are currently day 4 of potty training my 3.5 year old non verbal boy. Today he had 14 wet pants and 10 wee’s on the toilet. It’s a process but we are preserving. We use tablet time with baby shark to get him to sit and wait on the toilet, then he gets a milky way magic star chocolate if he pee’s in the toilet.
We can do this!, does he have an ipad or something he can play on while sitting on the potty?, My son seemed terrified of the toilet at first. We bought one of the potty seat inserts and he didn’t like that either lol.
I just let him move and drag the seat insert around the house and eventually he started sitting on it on the couch ( while he still had his pull up on). When he finally wasn’t afraid of it we started letting him put it on the the toilet. Practice flushing the toilet. Then when he would finally start sitting on the toilet we would have special books we would read while he was there . Fortunately for us once he started using the toilet he never went back to going in his diaper/ pull up.
For preparation we read pretty much every night for months before he would actually sit on the seat.
Books we loved:
P is for potty Elmo book.
And Potty by Leslie Patricelli book
Good luck! You’re doing a great job!, try running a tap in front of him. seeing running water gets child to pee., Completely understand what your going thru- my son last year started kindergarten (now 1st grader) and he would have days of success and days of accidents; partially non-verbal and would either say something very last minute and either make it or have an accident standing on the playground or in class, not saying anything to his aid..
We were fortunate enough to have an amazing kindergarten teacher and aids that worked with him and gave us some great ideas. We found social stories and making them fun and easy to understand really helped. We also made diagrams that we have at each household. As he got more comfortable with the language and diagrams, and of course incorporating reward program ( some type of food or activity he wanted to do) brought a lot of success.
Over summer, my boyfriend and I really worked on getting him comfortable at home and out& about communicating, asking him and making more of a schedule to use the bathroom.. you also know the signs, mannerisms when your kid has to go to the bathroom 🥲 good days and sometimes fights but just reminding him it’s okay and you are here for them is so important. Not getting upset if an accident happens but discussing it and how we can change the uncomfortable moments. His dad and I see differently on pull-ups and I really put in more effort of potty at home and starting night time training, which is an ongoing process. Many nights of lil sleep for our household, changing sheets multiple times, changing car seats, all the things that come with potty training.. but after 4 months, we started to get somewhere , which was exciting! Although most times he’s pretty much sleep walking, we are definitely almost getting to a point where he’s somewhat lucid and acknowledges using bathroom and quickly gets back into bed and back to sleep..
He started first grade this year at a new school, which def brought challenges, along with updating his IEP.. the accidents started again during the day at school.. but more success overnight. After getting his IEP updated and getting him into the correct classroom with an amazing teacher who understands his needs and what works for him, I can’t say this enough, social stories and encouraging parental support are going to be your best friends and get you thru!!! It takes reminders and communication, but he wakes up with us most mornings dry, he still has a potty dance and we sometimes have to tell him to use the bathroom and other times he will just run to restroom and talk out his steps of using the bathroom independently.
Im sorry for the rambling but want to try and be as much help and support as I can. Us parents gotta stick together and work together !! Willing to share social stories and diagrams we use if would help but hope I provided some kind of help and thank you for the post. Always helps knowing you aren’t the only person going thru something ♥️♥️🙌, I think with a lot of things, if it’s a battle, it’s not going to work out well. It helps to get to a place in your mind where you are not so upset about using the potty or not. Maintaining a neutral face and voice can be very helpful. It’s not easy of course.
I got the impression at one point that cheering my son on was not helping - I’ve read other people’s stories who had a similar experience. Their kid would rather have a low key thumbs up than tons of praise. That resonated with me, because I’m like that too. That’s where having a more blasé attitude can help. Like peeing in the potty is the last thing on your mind. Food is the same way.
Autistic kids are looking for any way they can find to control their environment - don’t play in to it. I find it can also help to act like whatever thing you’re trying to do is coming from somewhere else - not my idea, that’s just the rules. 🤷♀️ Makes it easier for them to accept they can’t take their Switch to school, etc., I know many kids don’t, but we had success with sticker charts (specifically for pooping in the potty, which came about 4-5 months after peeing successfully)., I have had to reconcile myself to gratuitous bribery with my youngest (not autistic) for potty training, sometimes it’s just what is needed 😆, Yup, my son may have that. Its ROUGH., I typed out a big response, but it was long winded
I will just say that pee/poo potty charts with stickers and rewards worked like magic for my son.
|
Lost it
|
Maybe it’s because I’ve been very sick for the past two+ weeks, or maybe just because I’m tired of trying to raise a very autistic, nonverbal kid who played in his own shit last night, but I lost it this morning!
I yelled mean things at him, got frustrated when he wouldn’t use a spoon despite months of fucking training, gave up when he wouldn’t help me AT ALL with dressing him, and just had a fit. He was upset at first, but now doesn’t care. He only gets upset when I cough, or he doesn’t get what he wants.
I hate autism and wish it didn’t exist. There are literally no benefits to having low functioning autism. For the small amount of people who thrive with higher functioning autism, there are tons of kids, adults and caregivers suffering with the higher support needs kind. Judge me if you want, it’s the truth. This neurological disorder sucks.
The max amount of therapy we can get is two hours per week! That’s it.
I have been trying for four years to accept this, but it never gets easier. He just gets bigger. 😞
|
Felt the playing in his own shit part. I truly don’t get how my kid will literally throw up putting a new food like rice or a different flavored goldfish to his mouth but will willingly put SHIT in his mouth. Logically, I know his autism is not his fault but emotionally, it drives me tf insane., *I hate autism and wish it didn’t exist. There are literally no benefits to having low functioning autism. For the small amount of people who thrive with higher functioning autism, there are tons of kids, adults and caregivers suffering with the higher support needs kind. Judge me if you want, it’s the truth. This neurological disorder sucks.*
- Yes. Yes it does. It's devastating and draining and so scary because there is no outlined path for them. With a neurotypical child, while you can't predict their life will follow any one path, you know based on their ability to interact with the world, perform activities of daily living, understand and interpret information that they are generally going to be able to make it. They may not be rich, they may not be the most handsome or beautiful, they may not be the smartest in the room, but they will be able to move thru the world without having to rely on others to help them.
*The max amount of therapy we can get is two hours per week! That’s it.*
- we get 1 hour a week in home speech and 1 hour *every other week* for in clinic OT. We've been on a waiting list for feeding therapy for over a year! If we hadn't figured out a smoothie recipe to make for him he'd have surely starved to death by now! I get it. I feel you and this shit is so hard and unfair.
*I have been trying for four years to accept this, but it never gets easier. He just gets bigger. 😞*
Yeah this is one of the biggest issues as well. My son is cognitively like **maybe** 1 years old, but almost 4 years old. He's already very tall (his dad is 6'2) and he's STRONG. I hope he gets "better" but realistically he's level 3 and that might not happen and "better" could mean at 21 he's learned to tie his shoes (for example)?! I mean is that what we have to look forward to?
That's not "better" to me. Whether he would be able to comprehend or not, that is NOT A LIFE it's an existence. He may be "happy," I mean ignorance is bliss, but the amount of care a low functioning person will require is daunting.
I love my son, like I'm sure you love yours but because I love him so much I can admit I fucking HATE the affliction of Autism that has ruined the life he could have had. There will be a lot of people, some not even affected by Autism at all that will spout off toxic positivity to you about how it's a gift, a super power, how God/Buddah/Whatever version of religion they belong gave this amazing journey to only his best believer or some shit but I want you to know...
I see you.
I relate to what you're saying.
It's not a beautiful journey.
It's not *Ausome* 🙄
It's a nightmare that we won't ever get to awake from and one our kids don't even know they are in.
It's hard AS FUCK in "Holland!" (That insipid little poem you've likely been told about regarding disability...UGH 🤢)
I love my child more than my own life and I recognize a lot of how I feel about his condition and his future are rooted in fear and uncertainty but I can acknowledge that and still do all the things (therapy, sped preschool, IEP,etc.) and just hope for the best. That's all we can do. But don't let anyone invalidate how you feel. Just try and work through it because we're going to need to be tough for this "life" we now find ourselves in!, This sounds so very very hard. It's not fair.
It's not fair that he has to play the game of life on super hard mode. It's not fair that if he is to have any hope of surviving childhood, you have to play on super hard mode too.
I'm sure he wishes he had a way of telling you that he is tired of learning to use spoon and doesn't want to do it today. I bet he is tired of feeling upset too.
Be kind to yourself. Parents have meltdowns too., Agreed. I have a child that just won't TRY. It's not because he isn't able, he just doesn't want to try anything to help himself and will flat out tell me he doesn't do it because mom will do it:
Go to the bathroom and use the toilet at 8 years old.
Use utensils without multiple verbal prompts, at just about every bite. Sometimes he's okay with it. Sometimes not.
The house is destroyed because they have accidents and make food messes everywhere and I'm perpetually exhausted and dealing with chronic pain issues from constantly bending over/picking things up/cleaning and prompting verbally every few minutes.
Dress himself. He can do it. Will he most of the time? No.
We pay $100 a week for OT which has done nothing, and they give basic suggestions anyone with 2 brain cells could figure out. Fwiw, I have sensory processing issues as well. Now they want us to pay $200/week per child for speech and ABA.
At what point do I say, hey - there is no progress. It's like getting blood from a stone. It's just not worth the money/energy? I see kids with down syndrome outpacing my children when my kids are intellectually gifted.
I'm livid, and also on the spectrum., I am a high functioning autistic adult and I read this sub because I assume my children will be autistic. I am so, so sorry for the way high functioning adults talk about parents of severely autistic children. Unfortunately, not everyone takes steps to challenge the self centered thinking that is inherent to autism, or treats autism like the disability it is. It's much nicer to pretend it's just another way of thinking and if anyone has a problem with anything you say or do, they're oppressing you.
I also fucking hate autism and if I could take a pill to cure me of it they wouldn't even be able to finish explaining it before I shoved it down my throat. It is not even worth my "gifts." People talk like that to cope.
I know it must be extremely challenging to have a optimistic outlook when your son is struggling so much. You are bearing a very heavy weight all while being made to feel evil for talking about it in slightly the wrong way. It's obscene. You love your son and all you want is for him to be happy and safe. Autism gets in the way of that. I wish I had advice or something other than solidarity for you and all the other parents in your situation., My almost 5 year old has been getting naked every night for the past 2 and a half weeks. I feel this.
Being nihilistic is an easy slope to slip down. I have found some peace there in that all milestones NT kids have to prove are completely irrelevant to us. Positive Nihilism is the best I can hope for..., I absolutely hate what autism has done to my precious child. It has robbed me of hope. I was always an optimistic person capable of weathering all storms in life. But this storm called autism has wiped out all my hope. I see women around me having another baby and I cannot do that as I am worried that the child will also be afflicted with autism. Everyone is happily moving on in life except us. Everyone is happily dreaming big things for their children except us. Autism is not my fault, it is not my child's fault. I am so amazed how so much research money is being poured into autism and still there is no treatment/medication to cure it or reduce the severity of it. I am just so amazed. And cases continue to keep rising., I often think to myself that I wish autism (and pathological demand avoidance) were a physical entity that had a face, so I could punch it., I love my child but I hate autism too. I constantly wonder why us. Why make my child’s life harder. I feel like a shell of a person, and most of the other parents of older autistic kids look depressed and tired. That scares me. I hate thinking about the future., I feel for you all. Every one of you. That's why we're here - to share experiences - good and bad, and commiserate. People without ASD kids don't get it, and there are so many levels and unique cases. Every one is different, and it's a learning journey. I pray each and every one of you find some peace in your challenges. Although we didn't ask for it, we each have our own crosses to bear. Thanks for sharing your thoughts and feelings here., I understand how you feel. I walked in on my 4 year old painting his room in poop. We had only had crap therapy program. I didn't understand how to address the issues and had no understanding of good therapy. You are yelling at the wrong person. Document his disability, take videos, take photos, and document problem situations. Go to your medical provider and raise hell. DEMAND an in home ABA program with a good agency. Don't take crap from anyone. Call 20 times a day. If they don't pick up go to their supervisor. When you get a good in home ABA program learn what they do and learn how to address problem areas. Become better than the therapist. This will pay off and will get your life back., ♥️
Give yourself a break, nobody else is gonna unless you keep throwing a fit, because rEsOuRcES aRe sO sCaRcE...but you have to direct that fit at the right places- Can you talk to your service /support coordinator and try to come up with some ideas that might provide the help you deserve?
Can they write you up a grant to get you some of [these](https://littlekeepersleeper.com/) for starters?
Send a video of what you deal with to your state representatives- let them know that funds need to be redirected. Help is needed.
Check out these guys
[NCSA](https://www.ncsautism.org/)
I hope your day gets better., I'm so sorry you're having such a hard time. I came to offer possibly a piece of advice. My little one has a habit of pulling his pull up off at night and passing and shitting in his room. It was driving me crazy. I finally figured out a solution for the time being at least.
I bought some footy pajamas and I put them on him backwards so he can't take them off without my help., i hate autism sometimes too... it makes me sometimes wish i was never born in the first place. i'm level 2 and i used to be level 1 until my life just was one shitshow after another and i could no longer cope with it and got worse until i ultimately regressed at 15 years old. my whole life plan from when i was 9 to only a few months ago was to just kill myself once i'm 18... i wasn't even in the double digits agewise and i had a solid plan for suicide. the only reason i don't have that plan anymore is now i have support which i should have had a long time ago but the world is just stacked against autism, I feel your frustration. I’m sorry., Single dad of a level 2 5 year old here.
How the hell are you only getting 2 hours per week?!?!? My son started level 0 basically last year ABA and goes 40 hours a week for almost a year now with crazy improvement.
Some regions of the USA differ greatly in resources available, I know from first hand experience.
I would like to say I understand all the feelings and I’m sorry. It’s not easy. However some days are better than others. Consistency is key, keep doing an amazing job you’re little one appreciates you.
It took awhile for my son to show improvement I literally felt like I was somewhat raising a vegetable… I don’t feel like that at all anymore. Every day still has its challenges but we’re getting better every day!, You have to embrace the poop. It's all a part of the package that comes with your child. Accept it, love him, let him know you love him, and things will get better.
It's so hard when your frustration level hits 11, and my wife and I have both done are share of screaming. But... to whatever extent you can, make a game of whatever it is he's doing.
In his mind, he's not trying to piss you off. He's reacting, not acting.
My heart goes out to you. It's so unfair. If I'm stopped at a crosswalk, and I see a kid talking to his father pass in front of my car, I sometimes get the urge to hit the gas. But I don't.
Be well., It is so hard. He is almost five. Every day I pick him up from school , and "how did it go today" Is "well he was extra pinchy today and was upset until lunch time" etc. It is just never ending "no of course he didn't have a good day he has GDD"
I can tell that the EA hates her job and I know. Summer is starting and I just don't know what I'm going to do. I try potty training for hours and get zero reward. I try to be positive, I really do but I have no vice anymore. Can't drink or smoke, even my dog is scared of him now and won't sit in the room with us.
I'm constantly trying to clean but every time I do he gets into something else. He has been jumping on the large freezer in the kitchen and it will break soon and I have no idea what I will do when that happens. I try to put things on it but he just throws them off. I block him from the kitchen but then I can't work on it or cook.
He just climbs on everything, everything climbable is broken. His 800 dollar disability trampoline is about to break and I have no way to replace it, That will be devastating.
My wife is having it even harder as shes the bread winner and all her money goes to replacing needed things or paying for useless therapy. Speech therapy is legit useless, It is like taking him to play with a 12 year old and he never learns anything just throws her toys around and ignores her.
OT is even more useless. Just take him to the Potty every 20 minutes and hold his tablet in front of him! Ok sure as he tries to get up non stop and no amount of treats or coaxing or yelling will get him to stop.
We have to hold him down in a sheet to shave his head every 2 weeks or he will RIP hIS HAIR OUT. It is such a struggle and hes getting strong. We have to ask our neighbor to come over so she can hold his legs and I hold him still.
The person who said that downs syndrome are outpacing is right on the money. I would give anything for him to have had that instead, As level 3 GDD is so very much worse.
Hes going to out grow his car seat very soon and I have no idea what I am going to do with that. Well have to get those seatbelt locks with the key and im sure he will be able to get out of them.. then what?? Hes going to be jumping around in the car , well get a ticket at best in an accident at worst.
I used to have friends , I used to enjoy going for walks with my dog, all of that is gone. My wife works double shifts to keep us above water and she is so tired that we can't enjoy each other at all.
I've come to terms with the whole spectrum bullshit, as I know they won't give our severe children a different word for what afflicts them. It did make me so angry for the longest time , usually when level 1's come in the forum and think they have any idea what they are talking about, but in the wide over arching situation , internet drama just doesn't bother me anymore.
His doctor is about to retire and I have no idea what the next one will be like, if they will care more, or less on helping.
Canada , other then public school, has zero resources without years long waiting list that I'm still on with zero knowledge of when ill get some magical phone call.
I'm just sad, less sad then a lot of the really sad posters we get some times but just.. sad. Why oh why.
I feel most bad for his brother, who is almost 12 and is really such a great person. He has given up so very much and deserves so much better. I hope that he doesn't hate his brother some day because of it.
-insert toxic positivity about how WE CAN DO IT!!! /s, I totally get it. It’s so hard. My son is basically the same as your child.
However, that being said, I spent a long time in a victim narrative. ‘This isn’t fair, why did this happen to us, I can’t face waking up another day’ were thoughts I had every single minute of the day.
Our situations are not going to change, and they’ll probably get harder. But I birthed and brought my son into the world, and autism is hard enough, please don’t allow depression and despair rob you too. I now take pride in the fact that I am a psychologist, and single mother to a child with autism. I think that’s pretty damn amazing. I know it’s hard but every day look for the small joys, no matter HOW small they are., I can’t even get any assistance for my diagnosed 3.5 year old. I’m in Australia and had to wait months for a planning meeting after waiting years for an actual diagnosis.
The thing that pissed me off is because the silly women who were part of his diagnosis team were happy he was diagnosed. They said with intervention he can be functioning.
What intervention?!? He’s not had any intervention?
The speech pathologist we saw prior to his diagnosis always wore masks and actually didn’t do anything other than to talk at my non verbal toddler.
I’ve lost it many times.
He pissed at the top of the stairs last night while I was getting his clothes from the dryer. Just pissed on the baby gate. I didn’t lose it then. I didn’t lose it when he broke my tooth after hitting me. I didn’t lose it when he screamed until 2am this morning because he wanted his stuffed toy and couldn’t verbalise it.
I didn’t lose it when he smeared poop everywhere.
I do lose it when he groans and shrieks all day and kicks me in the head and violently rocks. I put up with so so much. It actually makes me so angry when professionals tell me to encourage his stims. The next person who encourages me to facilitate his rocking will likely feel my wrath. I swear I put up with so much, I’m calm, I do things for him, I love him.
But when professionals who’ve never lived with a level 3 autistic toddler who is non verbal and whose has GDD gives me “advice” to encourage dangerous and annoying behaviour I’m going to lose my shit.
When my child was initially diagnosed with global developmental delay I was told not to google it. So of course I did. Global developmental delay is the politically correct term for what used to be _”retardation - specificity unknown”_ in the DSM. I have family members on both sides of my son’s family use the R-word. My sister even used the r-word to describe my sons shoes that I bought from Korea when he wouldn’t wear normal shoes because of sensory issues concerning his feet.
I’m so surprised I don’t lose it more than I actually do.
I read of parents on here with high functioning autistic children going on about their accomplishments but not being interested in holding a crayon to draw I just want to scream! These kids talk! They can count and know their alphabet! My kid can’t count to three. He doesn’t even know his own name.
My kid can’t even ask for water - that’s how extreme his condition is. When he goes to daycare he won’t drink anything all day., , get into aba now. card has some good centers., You are how I feel lately. I can't remember the last day I wasn't attacked. Yes poop happened B4 also. He's 11,150 pds and overwhelming in anger and aggression. Single mom who can't work and has extreme anxiety and depression. Some days I don't even bathe bc why bother no one cares. ABA was coming but now due to behaviours all is being reassessed with new approach. I bare my soul to cashier at grocery store and cry bc I never get a break. He refused school so literally I get no respite except when he sleeps. Then I stay up and fuck myself over by being exhausted. I begged God to tell me why it's so awful. Why did he take all of my family and leave me here struggling without family/and no way to earn except sons SSI and crap child support. It doesn't cover rent and I am struggling. I have meds,psychiatrist and therapist. Therapist asked do u have friends? Well not people I see. Hi Laura let's hang out, oh Jesus my son just bit your child and she's bleeding and screaming. Been there done that. I accept everything and I do keep praying it gets better. I just tell myself there's no one else and he doesn't mean to be this way. My mind goes back to "Zelda" in first pet cemetery movie where she is dying from Spina bifida and stuck in crib and dies while her parents left her with sister who is traumatized bc of it. That's my image when I feel like a failure as a parent. Autism is isolating., Love this comment. If one more person sends me the welcome to fucking Holland poem…, Thank you so much. I’m on a number of online autism caregiver support groups and your response and understanding is VERY appreciated!, Brought literal tears to my eyes. Thanks for sharing your response., Yessss. I agree with all of this. Level 3 autism blows, I love this comment, and i am saving it to read when i feel alone in this whatever feelings i feel, to know that i am not alone, when i want to shout to the world that autism isnt a superpower and no, my child doesnt have an extraordinary ability, he can barely read. I read this when i would need that dose of reality. And i will read it for the last line!, I love this and you, I’m not OP but thank you so much for this. I needed to hear it., I would say severe cases is where ABA is most helpful. We've been doing speech and OT for years and still are with our daughter and other kids, but we've seen absolutely nothing come of it. With 8 months of ABA we have seen amazing progress with her. Nothing else worked. Nothing.
The people that bandwagon against ABA despite having zero personal experience with it and call parents abusers based on their made up bullshit can go to hell. It's the most effective thing we've got., Sometimes if you make enough of a fuss (and I KNOW you don't have the energy or desire to fight yet another battle, I know it!) You need to demand that they provide your kids with what they NEED sometimes- because they CAN but they often don't...
Are they providing ABA in home services? That should be covered in full by Medicaid, which autistic children are entitled to regardless of their family income.
If they aren't able to find providers- can they help you (or negotiate on your behalf, ideally) with in-center providers to accept what they'll pay?
Sometimes going to your primary insurer and asking for help will work- ours actually has a department for that. They may be able to find you more than you can on your own.
Do you have ESY? you should. It's at least a break for a limited # of hours for a few weeks out of summer. Even if it's mostly bullshit. School should provide this even if they have to farm it out to a special needs program that they pay for. And bus them to.
If incontinence and elopement are issues you struggle with, maybe they can find you a home healthcare worker to come and help (also Medicaid funded), Is it possible for mom to just not do it? Letting it get messy to a point where they care without going insane might be difficult, but learned helplessness is something disabled children can struggle with as well - precisely because they used to need extra help, and it can be hard to know when to stop providing that.
I'm assuming you've tried timeouts/restricting access to preferred activities when they don't do stuff already, as well as just refusing to do it yourself - but I've met therapists that considered it their duty to prevent every temper tantrum before it happens, so sometimes the advice you get from them isn't helpful at all., [this might help you! ](https://littlekeepersleeper.com/)
I actually think that you might be able to make a case for funds to pay for some if you talk to your service coordinator /support coordinator? They're super durable and fantastic- but so expensive..., I've started putting my son in footy pajamas, but I put them on backwards so the zipper is in the back and he can't take them off without my help and that has helped tremendously., I think the rising cases is really just more so that many more high functioning people are getting diagnosed that were previously overlooked (seen as just quirky, for example). I now realize how many people in my family are def autistic but they are not officially diagnosed., This is the way! You're an amazing parent., I do that with my son too. You can buy "special needs" onsies from amazon that zip up the back and has a button so the kid can't unzip it., We used littlesleeperkeepers. They make big sizes., I’m so sorry! The feelings I post are coming from a heartbroken and exasperated parent. (And one that has also been ill and sleep deprived) Many days, I get angry at autism, but also know how much harder it must be for my son and people like him to live with it 24/7 firsthand. (Which can cause a guilt and shame spiral, because I do care for my son and don’t want him to hate himself.)
I am relieved that you are finding help, and just the fact that you are trying to fight shows how much progress you’ve made. Please don’t kill yourself, you’re still so young and have much to offer!, I started vaping again even though it might accelerate a health condition I have at just 30 years old because it’s my only vice. If I enjoyed drinking I’d probably do it every night.
My 2nd cousin was pregnant at the exact same time as me and smoked freaking meth in her pregnancy. Her child is advanced and flourishing.
I try to take me time to do things that make me happy, but the reality is we are caretakers forever to kids that will get bigger and stronger and there is no escape. It’s extremely depressing and I sort of laugh when people suggest therapy. Like I have $150 a week for therapy when I’m paying $2k a month for therapies and sensory items., [deleted], Has anyone given you advice on redirecting his stims? For example my son stims audibly. It's just this formless yell he makes at the top of his lungs and he can do it seemingly forever.
What we did was when he started, one of us would make a formless tone and go up the scale. Sort of doe Rae mee but without formed words. And it's working. Slowly but it's working.
He'll start, one of us joins us, and he'll change from yelling to "singing". Not all the time but the times it does work is such a relief. Still can't have a conversation but listening to his little voice go through scales is so much more pleasant and less stressful.
Once now he's actually done it himself. Started yelling and switched without prompting. Sweet Jesus I was as proud of him as I was of any achievement my NT kids accomplished.
Just to balance the story, sometimes we'll start, he'll stop yelling, look at us, say "no sing", (he barely verbal) and go back to yelling. I guess sometimes you've just got to yell., *Global developmental delay is the politically correct term for what used to be _”retardation - specificity unknown”_ in the DSM.*
- yes this is what I've discovered as well after researching this diagnosis. It's heartbreaking and absolutely nothing to celebrate like some would like to have people believe.
*I read of parents on here with high functioning autistic children going on about their accomplishments but not being interested in holding a crayon to draw I just want to scream! These kids talk! They can count and know their alphabet! My kid can’t count to three. He doesn’t even know his own name.*
- Yes a million times YES! I get they are proud of their children's abilities despite having an autism diagnosis but OMG. I'd literally sacrifice myself if my son could talk (he's said two words, has two signs at this time but he's almost 4!!!!), understand and have functional language. I wouldn't give a flying FUCK if he could or wanted to draw! Like omg, you totally GET IT! I don't blame some of these folks because they, just like us, should celebrate all the wins but I simply cannot relate to having a high functioning child with "quirks" whose biggest problems are not having interest in drawing or friends but who is a straight A student in mainstream classes ...ay Yi Yi lol, Who on earth is upvoting this? Global devlopment delay is not a new, politically correct term for mental retardation. Intellectual disability is what we would currently use in place of that term., I feel you, We were in ABA and it was not improving his behaviour at all and was basically kind of a scam. I looked to find other ones but there’s none in my area.
If speech and OT doesn’t work, we’ll be out of options., , You are so very welcome! Hoping things improve for both of us and our families 🤗, , We are on a waitlist for a waiver for services. I am told it's years long. I was not aware medicaid is part of this. (I live in Iowa, btw) Right now we're just using our private insurance. Elopement isn't really an issue. They're not fully incontinent but just unwilling or unable to communicate they have to go. They can recognize the feeling but can't say "hey I need to use the bathroom" or sign.
Our kids are typically well behaved and so academically advanced school is not willing to give them ESY. Our oldest did ESY one year in preschool/kindergarten and it was honestly maybe 2 hours of instruction and not worth getting the entire household up and dressed for drop-off and pickup., If I don't do it, it won't happen at all, even if there is dire consequences. My house is already pretty much hoarder level bad as it is unless I clean and I can't have them live in filth until they eventually "get it." I did get into the gentle parenting thing for a while where you would just work to prevent tantrums in the first place by bending over backwards and controlling their environment or meltdowns before they happened but they never would learn to work through things and regulate,so I ended that very quickly. Even versions of gentle parenting that is less permissive didn't go over well because they just depended on me to regulate and do everything for them like a security blanket.
My husband isn't on board either and he is just as messy if not worse and does the learned helplessness thing too. "I can't watch BOTH kids at the same time," "You have to give me a list of things you want me to do" (Then doesn't do anything with the lists I give him.) He's also now refusing to clean claiming he can't., Can’t second these enough - they are worth their weight in gold.
Our daughter can get out of any outfit. She’s like a cat with floating shoulders. Even her PT and OT have asked if she even has bones sometimes.
Nothing worked. I was crying every morning knowing what would greet me when I opened her door. We tried everything. Backwards jammies, special cut ones, taping diaper on.
These are the only clothes that work. She was SO mad the first few nights in them, but she got over it and the quality of our life is so much better now. The woman that sells them sends them very quickly if you have a special needs kid. She’s an angel I love her., We got one and it worked like a charm! That'll you thank you thank you!!!, Awareness doesn’t explain why level 3 is not flattering or reducing. Diagnosis criteria for level 3 has remained pretty consistent for the last 40 years. Increased awareness may only explain the prevalence of level 1, >Black and white thinking is seriously destructive and I had to reprogram my brain to drop it.
I am also an actually autistic adult, and this just kills me. Rigid black and white thinking is all of our downfall, why do so many of us want to pretend that it's good? I have come so far since I got my diagnosis. The idea of going back to the tornado of black and white thinking I used to be in makes me want to throw up. Every time I challenge my black and white thinking I feel lighter.
I'm so happy for you and your daughter, and I hope your other two children will follow. I'm going to PM you the names of two autism subs where toxic positivity is not allowed., This. I actually give those posters a lot of grace. They often cause issues in forums and offend people…but people forget that a social communication deficit IS part of their diagnosis. I try to reframe most of the criticism in that light while taking their points seriously, [deleted], Global devlopment delay is not a new, politically correct term for mental retardation. Intellectual disability is what we would currently use in place of that term., there is good quality and bad quality aba. autism live has a ton of resources., Try floortime [www.icdl.com](https://www.icdl.com) . It will help you connect with your kid., I'm not sure how every state works- but there are different waivers for different services.
But-i believe that there is an income waiver that should entitle anyone with autism or a pervasive disability to receive Medicaid for insurance (you keep your primary family insurance, as well) though, and I didn't think there was a waiting list for that one apart from the processing period? It covers ABA, home health care, family based therapy, durable medical equipment, including adult sized diapers and pull ups, etc.
The other waivers generally provide other services which Medicaid won't usually cover- like residential placement and certain other things. Those ones usually have the major waiting lists. (criminal, in my opinion.)
I think incontinent is a broad term for "not potty trained after a certain age" basically. I don't think it needs to be for a medical reason, but I have heard that emphasizing that is sometimes a way to get things moving, service wise?
I'm sure everything is different state to state- but some things should be pretty similar, not counting the availability of different things. The Philadelphia area has a wealth of programs and centers- the western side of PA has very little.
Esy is pretty much a joke, there's no education happening apart from maybe a little basic skills practice? And a lot of coloring... but it's a break. If life skills are an issue, maybe there's an autism school around you that has a life skills based esy program that you could get the school to consider., She is a life changer! The quality of these is next level, though- they really do grow out of them before they show any wear other than a little fading., That's wonderful!! I really wish they were more widely accessible, because they're amazing! Hope you enjoy some more sleep and less cleanups!, [deleted], Global developmental delay is used for young children and intellectual disability is diagnosed at a later age when they can be validly assessed. GDD can resolve., [deleted], I was disputing the above poster that claimed GDD is what professionals used to refer to as mental retardation.
|
Loud Noises Question - Toddler ASD
|
Hi -- my recently turned 2 year old was just diagnosed ASD and some of the key markers is that he doesn't respond to his name often (definitely if someone other than me or my dad call his name, including teachers at daycare) and very self-directed. He is capable of doing puzzles and age appropriate play, but does them when he wants to, not really when asked... and has 0 desire to engage with other kids his age (though will be entertained by older kids who really "perform" for him, if that makes sense).
Sooo here's the question. I know each kid is different, but his hearing was fine per ENT. He does need tubes for constant ear infections. We were at a game the other day and fireworks went off and he didn't react. Fire alarm too - he wasn't surprised or scared or covering ears, just like it was any other noise and looked around for a few sec. What do you all make of that? Can that be ASD symptom? I worry if I put the tubes in then he'll be sensitive to sound? Just curious what others' experiences have been?
thanks!
|
Tubes are to help hearing and ear infections. They can cause a lot of pain. My son is 3 and has no issues with loud noises but it’s not. Each kid to their own. My son is hypo-sensitive meaning he needs more input stimulation.
Other autistic types are hyper sensitive and need less input stimulation.
There are headphones that toddlers can use to block noises if needed, Tubes are to help hearing and ear infections. They can cause a lot of pain. My son is 3 and has no issues with loud noises but it’s not. Each kid to their own. My son is hypo-sensitive meaning he needs more input stimulation.
Other autistic types are hyper sensitive and need less input stimulation.
There are headphones that toddlers can use to block noises if needed, Tubes are to help hearing and ear infections. They can cause a lot of pain. My son is 3 and has no issues with loud noises but it’s not. Each kid to their own. My son is hypo-sensitive meaning he needs more input stimulation.
Other autistic types are hyper sensitive and need less input stimulation.
There are headphones that toddlers can use to block noises if needed, Tubes are to help hearing and ear infections. They can cause a lot of pain. My son is 3 and has no issues with loud noises but it’s not. Each kid to their own. My son is hypo-sensitive meaning he needs more input stimulation.
Other autistic types are hyper sensitive and need less input stimulation.
There are headphones that toddlers can use to block noises if needed
|
Low / high functioning autism question
|
Hi all - we’re starting a full diagnostic process of our 3y3m son next month, but as I tend to prepare myself for what’s to come… would you mind sharing any examples of how your little ones around my sons age were functioning? What were they able to/ weren’t able to do?
I find the descriptions online of what to expect from high/low functioning kids difficult to find or very vague…
Thanks,
|
I actually have a big problem with the whole high vs. low functioning titles because they don’t really contribute anything productive to the autistic society. Because autism is a spectrum, it really is subjective as to what is considered high vs low functioning. For example, people might assume someone who is non-verbal to be low functioning but that isn’t necessarily true. There are many non-verbal autistic people who are very independent, and require limited support. On their hand you may have an autistic person who has solid expressive language skills, but struggle with executive function, emotional regulation, and be extremely hypersensitive to environmental stimuli.
But to answer your question, it’s so hard to tell at 3. My daughter was initially diagnosed at a level 3 (needing high support) and two years later she’s at a level 2, improved language skills, and she is on par in her class with both counting, and phonics., Those terms are outdated and no two kids are alike. More important things to worry about are specifics of how it affects them. Verbal or not. Major behaviours (beyond that of a normal toddler) or not. Fine and gross motor skills. Social skills., i don’t personally like using functioning labels and i like to refer to myself as having moderate/higher support needs. support needs in my opinion get the message across better. because i would be considered lower functioning but people have very rigid assumptions of what that is so i don’t use it -_-, Hello! My son is 8 turning 9 this year. He is diagnosed as level 3 in both areas of support. He is non-verbal. He honestly reminds me a lot of drawingsbytrent on instagram if you’re familiar, if not check him out. If I remember around 3 years old we were still working on potty training, it didn’t happen for him till age 5. He had basically zero verbal language, just crying and pointing and guiding. Lots of hand flapping and stimming. He still stims now but it’s a little different. He would always play independently and just beside children and not with them. He was also very sensitive to loud noises., As others have put so eloquently, it’s hard to determine what is low and high functioning especially as a child gets older and societal demands change. People have been adopting a wheel rather than a line to denote strengths and weaknesses in several areas.
https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/
It paints a more accurate picture of where support is most needed.
As for my 3 year old son, he was just diagnosed a week ago with level 2 support. He is speaking, but his communication is more requests and observations rather than expressing likes/dislikes. He isn’t conversational yet. He has no known cognitive delay, can make eye contact but not always, sensory seeking but not sensitive. He will play with me and his mom, but is ok playing alone. He doesn’t usually interact with kids his age. His safety is a big concern because he likes to run off and explore if we aren’t holding hands. And he rarely comes back if we call his name. Very rarely melts down. I can count on one hand how many times he’s melted down and that’s usually from waking up from a nap.
When using terms like “mild” or “high/low functioning” remember that these are subjective. So many factors can contribute to whether someone thrives. Environment is a big one., Thanks for your replies folks, apologies - I didn’t want to offend anyone as I’m pretty new to this… this has been very helpful., This is exactly my son. Waiting his diagnoses in a couple months, No offense taken! I did a lot of reading and learned so much over the past year. It’s pretty overwhelming. Just know that you are doing the best you can for your child and never be afraid to ask questions. :), I actually have a big problem with the whole high vs. low functioning titles because they don’t really contribute anything productive to the autistic society. Because autism is a spectrum, it really is subjective as to what is considered high vs low functioning. For example, people might assume someone who is non-verbal to be low functioning but that isn’t necessarily true. There are many non-verbal autistic people who are very independent, and require limited support. On their hand you may have an autistic person who has solid expressive language skills, but struggle with executive function, emotional regulation, and be extremely hypersensitive to environmental stimuli.
But to answer your question, it’s so hard to tell at 3. My daughter was initially diagnosed at a level 3 (needing high support) and two years later she’s at a level 2, improved language skills, and she is on par in her class with both counting, and phonics., Those terms are outdated and no two kids are alike. More important things to worry about are specifics of how it affects them. Verbal or not. Major behaviours (beyond that of a normal toddler) or not. Fine and gross motor skills. Social skills., i don’t personally like using functioning labels and i like to refer to myself as having moderate/higher support needs. support needs in my opinion get the message across better. because i would be considered lower functioning but people have very rigid assumptions of what that is so i don’t use it -_-, Hello! My son is 8 turning 9 this year. He is diagnosed as level 3 in both areas of support. He is non-verbal. He honestly reminds me a lot of drawingsbytrent on instagram if you’re familiar, if not check him out. If I remember around 3 years old we were still working on potty training, it didn’t happen for him till age 5. He had basically zero verbal language, just crying and pointing and guiding. Lots of hand flapping and stimming. He still stims now but it’s a little different. He would always play independently and just beside children and not with them. He was also very sensitive to loud noises., As others have put so eloquently, it’s hard to determine what is low and high functioning especially as a child gets older and societal demands change. People have been adopting a wheel rather than a line to denote strengths and weaknesses in several areas.
https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/
It paints a more accurate picture of where support is most needed.
As for my 3 year old son, he was just diagnosed a week ago with level 2 support. He is speaking, but his communication is more requests and observations rather than expressing likes/dislikes. He isn’t conversational yet. He has no known cognitive delay, can make eye contact but not always, sensory seeking but not sensitive. He will play with me and his mom, but is ok playing alone. He doesn’t usually interact with kids his age. His safety is a big concern because he likes to run off and explore if we aren’t holding hands. And he rarely comes back if we call his name. Very rarely melts down. I can count on one hand how many times he’s melted down and that’s usually from waking up from a nap.
When using terms like “mild” or “high/low functioning” remember that these are subjective. So many factors can contribute to whether someone thrives. Environment is a big one., Thanks for your replies folks, apologies - I didn’t want to offend anyone as I’m pretty new to this… this has been very helpful., This is exactly my son. Waiting his diagnoses in a couple months, No offense taken! I did a lot of reading and learned so much over the past year. It’s pretty overwhelming. Just know that you are doing the best you can for your child and never be afraid to ask questions. :), I actually have a big problem with the whole high vs. low functioning titles because they don’t really contribute anything productive to the autistic society. Because autism is a spectrum, it really is subjective as to what is considered high vs low functioning. For example, people might assume someone who is non-verbal to be low functioning but that isn’t necessarily true. There are many non-verbal autistic people who are very independent, and require limited support. On their hand you may have an autistic person who has solid expressive language skills, but struggle with executive function, emotional regulation, and be extremely hypersensitive to environmental stimuli.
But to answer your question, it’s so hard to tell at 3. My daughter was initially diagnosed at a level 3 (needing high support) and two years later she’s at a level 2, improved language skills, and she is on par in her class with both counting, and phonics., Those terms are outdated and no two kids are alike. More important things to worry about are specifics of how it affects them. Verbal or not. Major behaviours (beyond that of a normal toddler) or not. Fine and gross motor skills. Social skills., i don’t personally like using functioning labels and i like to refer to myself as having moderate/higher support needs. support needs in my opinion get the message across better. because i would be considered lower functioning but people have very rigid assumptions of what that is so i don’t use it -_-, Hello! My son is 8 turning 9 this year. He is diagnosed as level 3 in both areas of support. He is non-verbal. He honestly reminds me a lot of drawingsbytrent on instagram if you’re familiar, if not check him out. If I remember around 3 years old we were still working on potty training, it didn’t happen for him till age 5. He had basically zero verbal language, just crying and pointing and guiding. Lots of hand flapping and stimming. He still stims now but it’s a little different. He would always play independently and just beside children and not with them. He was also very sensitive to loud noises., As others have put so eloquently, it’s hard to determine what is low and high functioning especially as a child gets older and societal demands change. People have been adopting a wheel rather than a line to denote strengths and weaknesses in several areas.
https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/
It paints a more accurate picture of where support is most needed.
As for my 3 year old son, he was just diagnosed a week ago with level 2 support. He is speaking, but his communication is more requests and observations rather than expressing likes/dislikes. He isn’t conversational yet. He has no known cognitive delay, can make eye contact but not always, sensory seeking but not sensitive. He will play with me and his mom, but is ok playing alone. He doesn’t usually interact with kids his age. His safety is a big concern because he likes to run off and explore if we aren’t holding hands. And he rarely comes back if we call his name. Very rarely melts down. I can count on one hand how many times he’s melted down and that’s usually from waking up from a nap.
When using terms like “mild” or “high/low functioning” remember that these are subjective. So many factors can contribute to whether someone thrives. Environment is a big one., Thanks for your replies folks, apologies - I didn’t want to offend anyone as I’m pretty new to this… this has been very helpful., This is exactly my son. Waiting his diagnoses in a couple months, No offense taken! I did a lot of reading and learned so much over the past year. It’s pretty overwhelming. Just know that you are doing the best you can for your child and never be afraid to ask questions. :), I actually have a big problem with the whole high vs. low functioning titles because they don’t really contribute anything productive to the autistic society. Because autism is a spectrum, it really is subjective as to what is considered high vs low functioning. For example, people might assume someone who is non-verbal to be low functioning but that isn’t necessarily true. There are many non-verbal autistic people who are very independent, and require limited support. On their hand you may have an autistic person who has solid expressive language skills, but struggle with executive function, emotional regulation, and be extremely hypersensitive to environmental stimuli.
But to answer your question, it’s so hard to tell at 3. My daughter was initially diagnosed at a level 3 (needing high support) and two years later she’s at a level 2, improved language skills, and she is on par in her class with both counting, and phonics., Those terms are outdated and no two kids are alike. More important things to worry about are specifics of how it affects them. Verbal or not. Major behaviours (beyond that of a normal toddler) or not. Fine and gross motor skills. Social skills., i don’t personally like using functioning labels and i like to refer to myself as having moderate/higher support needs. support needs in my opinion get the message across better. because i would be considered lower functioning but people have very rigid assumptions of what that is so i don’t use it -_-, Hello! My son is 8 turning 9 this year. He is diagnosed as level 3 in both areas of support. He is non-verbal. He honestly reminds me a lot of drawingsbytrent on instagram if you’re familiar, if not check him out. If I remember around 3 years old we were still working on potty training, it didn’t happen for him till age 5. He had basically zero verbal language, just crying and pointing and guiding. Lots of hand flapping and stimming. He still stims now but it’s a little different. He would always play independently and just beside children and not with them. He was also very sensitive to loud noises., As others have put so eloquently, it’s hard to determine what is low and high functioning especially as a child gets older and societal demands change. People have been adopting a wheel rather than a line to denote strengths and weaknesses in several areas.
https://ablelight.org/blog/why-the-autism-wheel-is-replacing-the-spectrum/
It paints a more accurate picture of where support is most needed.
As for my 3 year old son, he was just diagnosed a week ago with level 2 support. He is speaking, but his communication is more requests and observations rather than expressing likes/dislikes. He isn’t conversational yet. He has no known cognitive delay, can make eye contact but not always, sensory seeking but not sensitive. He will play with me and his mom, but is ok playing alone. He doesn’t usually interact with kids his age. His safety is a big concern because he likes to run off and explore if we aren’t holding hands. And he rarely comes back if we call his name. Very rarely melts down. I can count on one hand how many times he’s melted down and that’s usually from waking up from a nap.
When using terms like “mild” or “high/low functioning” remember that these are subjective. So many factors can contribute to whether someone thrives. Environment is a big one., Thanks for your replies folks, apologies - I didn’t want to offend anyone as I’m pretty new to this… this has been very helpful., This is exactly my son. Waiting his diagnoses in a couple months, No offense taken! I did a lot of reading and learned so much over the past year. It’s pretty overwhelming. Just know that you are doing the best you can for your child and never be afraid to ask questions. :)
|
M-CHAT-R Score 9
|
Hi all. My son scored a 9 on the M-CHAT-R at 17 months. We have been patiently waiting for an assessment and finally there is an opening this Thursday. He is now 21 months. I have a few questions:
1. From everyone's personal experience, how likely is he to actually have autism with a score of 9 at 17 months?
2. What will the assessment look like? It will be run by someone specialized in developmental pediatrics and the testing is supposed to take 90 minutes.
3. Can the M-CHAT-R pick up on other disorders that are not autism?
4. This may not be a great question, but I know so little about autism. My son was recently checked for his developmental progress in communication, motor development, social, emotional, cognitive skills, etc since he was born a premie. We enrolled him in an in-home early intervention program when he was 9 months, and they use standardized forms to track his development progress and assign an equivalent age to several areas of development. He is developmentally appropriate/caught up at this point for all areas based on real age (not even adjusted age!). However, his social and emotional skills section actually score at 30 months as of a few weeks ago (so at the time, over 9 months ahead). Based on my limited experience with autistic family members and extreme naivete with autism in general, I'm surprised that given his social/emotional skills that his providers and people who know way more than me think he may still have autism. I have tried researching if those with autism can have great social and emotional skills, but I just keep finding information about masking and how it can appear that those with autism can have great social skills because they mask. It seems to me that 20 months old (when he took the developmental assessment) is a bit early to develop masking behavior, and since he was a newborn, we have always noticed he has been very social, and as he's grown, his emotional skills have always been very good. Is it common to have inherently good social and emotional skills and have autism? Again, I don't think he's masking, as he's always been this way and he is still so young.
If you've read this far, thank you! I appreciate everyone's thoughts if you're willing to share. Regardless of what they tell us this week, he is still the exact same kid, and we love him so much and will go to the ends of the earth to get him the best support he needs.
P.S. if I said anything offensive or used incorrect terminology at all, I apologize. Please correct me. I'm trying my best and still learning.
|
1. I don't have direct personal experience, but a score of 9 on the M-CHAT-R indicates a high risk for autism. The assessment on Thursday will provide a clearer picture of your son's developmental profile!
2. The assessment should involve a comprehensive evaluation of your son's developmental, behavioral, and social skills. This will probably include direct observation of your son's interactions and behaviors, as well as structured tests and questionnaires. The goal is to assess various areas of development to determine whether your son meets the criteria for ASD or any other developmental disorders.
3. The M-CHAT-R is primarily designed to screen for ASD, but it may also flag other developmental concerns or delays. It's not specifically tailored to identify every possible disorder. The assessment process should consider a range of factors beyond the M-CHAT-R results to provide a comprehensive evaluation.
4. It's important to understand that autism is a spectrum disorder, meaning it can present differently in each individual. While some individuals with autism may struggle with social and emotional skills, others may demonstrate strengths in these areas. It's not completely uncommon for individuals with autism to have good social and emotional skills, especially at a young age. However, difficulties in social communication and interaction, as well as restricted and repetitive behaviors, are key characteristics of ASD that are assessed during evaluations.
It's clear that you're doing everything you can to support your son, and your dedication is commendable! He is lucky to have you. As you said, regardless of the outcome of the assessment, your love and support will remain crucial for your son's well-being and development. If the assessment does indicate ASD or any other developmental concerns, it will provide a roadmap for accessing appropriate interventions and supports to help your son thrive. Keep advocating for him and seeking the best resources available. Wishing you all the best on Thursday and beyond :), Thank you so much for taking time to respond. And thank you for the explanations!, 1. I don't have direct personal experience, but a score of 9 on the M-CHAT-R indicates a high risk for autism. The assessment on Thursday will provide a clearer picture of your son's developmental profile!
2. The assessment should involve a comprehensive evaluation of your son's developmental, behavioral, and social skills. This will probably include direct observation of your son's interactions and behaviors, as well as structured tests and questionnaires. The goal is to assess various areas of development to determine whether your son meets the criteria for ASD or any other developmental disorders.
3. The M-CHAT-R is primarily designed to screen for ASD, but it may also flag other developmental concerns or delays. It's not specifically tailored to identify every possible disorder. The assessment process should consider a range of factors beyond the M-CHAT-R results to provide a comprehensive evaluation.
4. It's important to understand that autism is a spectrum disorder, meaning it can present differently in each individual. While some individuals with autism may struggle with social and emotional skills, others may demonstrate strengths in these areas. It's not completely uncommon for individuals with autism to have good social and emotional skills, especially at a young age. However, difficulties in social communication and interaction, as well as restricted and repetitive behaviors, are key characteristics of ASD that are assessed during evaluations.
It's clear that you're doing everything you can to support your son, and your dedication is commendable! He is lucky to have you. As you said, regardless of the outcome of the assessment, your love and support will remain crucial for your son's well-being and development. If the assessment does indicate ASD or any other developmental concerns, it will provide a roadmap for accessing appropriate interventions and supports to help your son thrive. Keep advocating for him and seeking the best resources available. Wishing you all the best on Thursday and beyond :), Thank you so much for taking time to respond. And thank you for the explanations!, 1. I don't have direct personal experience, but a score of 9 on the M-CHAT-R indicates a high risk for autism. The assessment on Thursday will provide a clearer picture of your son's developmental profile!
2. The assessment should involve a comprehensive evaluation of your son's developmental, behavioral, and social skills. This will probably include direct observation of your son's interactions and behaviors, as well as structured tests and questionnaires. The goal is to assess various areas of development to determine whether your son meets the criteria for ASD or any other developmental disorders.
3. The M-CHAT-R is primarily designed to screen for ASD, but it may also flag other developmental concerns or delays. It's not specifically tailored to identify every possible disorder. The assessment process should consider a range of factors beyond the M-CHAT-R results to provide a comprehensive evaluation.
4. It's important to understand that autism is a spectrum disorder, meaning it can present differently in each individual. While some individuals with autism may struggle with social and emotional skills, others may demonstrate strengths in these areas. It's not completely uncommon for individuals with autism to have good social and emotional skills, especially at a young age. However, difficulties in social communication and interaction, as well as restricted and repetitive behaviors, are key characteristics of ASD that are assessed during evaluations.
It's clear that you're doing everything you can to support your son, and your dedication is commendable! He is lucky to have you. As you said, regardless of the outcome of the assessment, your love and support will remain crucial for your son's well-being and development. If the assessment does indicate ASD or any other developmental concerns, it will provide a roadmap for accessing appropriate interventions and supports to help your son thrive. Keep advocating for him and seeking the best resources available. Wishing you all the best on Thursday and beyond :), Thank you so much for taking time to respond. And thank you for the explanations!, 1. I don't have direct personal experience, but a score of 9 on the M-CHAT-R indicates a high risk for autism. The assessment on Thursday will provide a clearer picture of your son's developmental profile!
2. The assessment should involve a comprehensive evaluation of your son's developmental, behavioral, and social skills. This will probably include direct observation of your son's interactions and behaviors, as well as structured tests and questionnaires. The goal is to assess various areas of development to determine whether your son meets the criteria for ASD or any other developmental disorders.
3. The M-CHAT-R is primarily designed to screen for ASD, but it may also flag other developmental concerns or delays. It's not specifically tailored to identify every possible disorder. The assessment process should consider a range of factors beyond the M-CHAT-R results to provide a comprehensive evaluation.
4. It's important to understand that autism is a spectrum disorder, meaning it can present differently in each individual. While some individuals with autism may struggle with social and emotional skills, others may demonstrate strengths in these areas. It's not completely uncommon for individuals with autism to have good social and emotional skills, especially at a young age. However, difficulties in social communication and interaction, as well as restricted and repetitive behaviors, are key characteristics of ASD that are assessed during evaluations.
It's clear that you're doing everything you can to support your son, and your dedication is commendable! He is lucky to have you. As you said, regardless of the outcome of the assessment, your love and support will remain crucial for your son's well-being and development. If the assessment does indicate ASD or any other developmental concerns, it will provide a roadmap for accessing appropriate interventions and supports to help your son thrive. Keep advocating for him and seeking the best resources available. Wishing you all the best on Thursday and beyond :), Thank you so much for taking time to respond. And thank you for the explanations!
|
MIL sexualises my 2 year olds stim
|
My MIL sexualises my two year old autistic daughters stim. One of them is she will lay on her front and repeatedly raise her hips/ bottom up and down. She only does this when she’s in a cosy mood and really happy and feeling loving. She will do it on the floor, sofa or my leg. My MIL is aware she is autistic and has tried to ask me to make her stop this as she thinks it’s embarrassing and says it’s a hit sexual but my daughter is two????
I find it disgusting she is sexualising this stim as my daughter is two years old? I’m trying not to be rude to my MIL as it’s not the only issue I have with her but it’s upsetting me that she’s seeing one of my daughters stims as sexual and embarrassing.
I think it’s embarrassing that she’s sexualising a two year old autistic toddlers stim.
Sorry for the rant
|
I'm not going to get into the MIL situation, but I will state that I have known safeguarding referrals for children who made such actions/stims. She won't be the only individual who thinks this, I'm afraid.
Given that stims often remain, imagine this as a 3yo, 5yo, 15yo..., 1. Your child is probably humping. It feels good to kids and kids will keep doing things that feel good. This is developmentally appropriate.
2. You should redirect to either have her only do that in private or stop doing it all together (though I wouldn't recommend this one).
Autistic kids are at a higher risk for sexual abuse. She is doing something innocent (to her) that to others could come off as sexual. You should change that., Both my autistic daughters do this. They're 6. My behavioral therapists referred to this as GSSB, but I don't remember what it stands for. Genital stimulation.... I just make my daughters request "alone time" and teach them that it's something they should do in private. I remember my aunt telling me that my cousin who is not autistic also did this as a child., Except a 2 year old can explore their body and it can be developmentally appropriate.
You can see why it makes your MIL uncomfortable though can’t you? No matter how awful she is. And others will too. As mentioned above as a mandatory reporter I would mark this behavior as a concern., Your MIL can be wrong in her approach, but this is a sexual action. It is out of place in the open, not because it’s evil or suggestive, but because people (in general) prefer sexual actions to be a private concern. Kids are supposed to experiment, it’s healthy and appropriate to do. Redirecting to a private place sounds ideal here! It’ll take time to learn though, and everybody (MIL included), should understand it’s developmentally normal, being addressed by the parents, and therefore none of their concern., I found this super disturbing, and I'm sorry that you have to be dealing with this. If you don't feel comfortable putting boundaries to your mother in law then you should tell your husband to do it. She is his mother, after all., It will pass. Teach her to go to her room so she can have more privacy. This is how children deal with emotions and relieve stress. You should not stop your child from doing this. We consulted this behavior of our daughter with ASD with a psychologist and he advised us to do so. Now she is 7 years old and it happens occasionally. the child will learn to deal with emotions differently and will not stimulate himself.
Edit.
MIL is this short for mother in law?
Tell her to mind own business. There is nothing shameful about what your child does. this is the simplest and accessible way to deal with emotions, Hey! My daughter does a similar stim (she lays on her back and raises her legs and arms and does what look like crunches). I’ve never met anyone else whose kid stims in such a similar way.
I just wanted to put it out there, that a few folks in the family and over the years have sexualised this, and our biggest retort has been for them to educate themselves on stimming and that it is often a coping mechanism for stress or relief of anxiety. We have learned not to hold back when it comes to addressing it. “It sounds like your sexualising this, and that’s wrong. This is stimming. It’s a stress-relief tactic a lot of autists use, just like exercising would be a stress-reliever for you. It’s not sexual in any way. If it makes you uncomfortable, then you can not look or ignore it.” I had to go so far as to point out that at least it’s harmless and no one is in danger. People really don’t understand these things, but being direct and calm is the best way to communicate it. If they continue to take issue, just mention the fact that you don’t have to visit and subject your child to their unreasonable demands.
That said, maybe a gentle redirection could help at times when people aren’t being reasonable (we’ve experienced that, too). A small, portable indoor trampoline; an indoor activity swing (appropriately secured and in her size/age range); even a portable ball pit could be perfect for helping to get that energy out in a different way. I wouldn’t force it, either way, but it can certainly help for kids to have alternative exercises they can do in their safe spaces., My kid starting doing this exact stim when she was only a couple months old. She’s six now and only does it when she’s tired and in a comfortable place. It’s like self soothing relaxing. I see no reason to prevent her from doing it. In fact I don’t stop her from any of her weird behaviors that are not harmful. If I tried to prevent her from doing something that soothes her, she would never understand why. She will, however, understand if her family is embarrassed of her for something that feels natural to her., Ugh. That’s rough. Why are MILs the worst?, I have found people who oversexualize *literally anything* have a lower intelligence.
Call her a pedo in front of everyone. Embarrass the stupidity out of her. Who else finds anything sexual with a baby... hmm? Hmm??, My family would just find it funny. I am Indian and we are a somewhat conservative culture but kids are never expected to behave like adults. They are kids!!. At two they are still very very young. Your mil is horrible. Anyone who can even be bothered by that are the real problem not your daughter. Let her stim ., I am an adult with a masterbation stim. It's actually caused by me ignoring going pee.i have to remind myself that when I feel like I have to get off. It caused me to stay in bed and miss appointments and be late. Weird to learn in your 30s that you could have solved hundreds of hours touching myself. Now I force myself to get up in the morning because the feeling will go away and am not late anymore because of that. Then throughout the day use it as an indication I need to go. It showed up as a kid by hanging off of counters and sitting on my heels. If I knew this I would not have to feel that shame for four decades that that things you just don't talk about can become. It probably started to be actually getting off when I hit puberty. So I thought my whole life it was a sexual thing. If my mother knew this information she would have curbed those things in probably a few months. Communication is the most important thing, to make it shameful and ignore it is not the way to go. It's supporting something she needs or doesn't need in an environment. It caused me dysfunction in every relationship because I seemed like I always wanted to get off. So that automatically meant sex to most men and they pushed and I would cave. I let myself be used and left me with major trauma. A child cannot be sexual at that age. Your mother will just perpetuate that it needs to be hidden and shamed. My first idea would be needing to pee and holding it which is very common in Neurodivergents. Next guess would be over or under sensory of some sort. I find music can encourage the feeling as well. So there is my honest answer as a woman who is not shamed by this anymore because it is like a completely legit thing that is medical not sexual in nature., Sorry I’m not familiar with MIL so my opinion might be off. This is your child who you know love and live for. Any parent of any child should ignore any comments, advice, remarks anything about their own child. It’s irrelevant disrespectful, rude, inappropriate and unacceptable. That’s any parent with a child. That said this issue makes it so much more wrong. If your child makes anyone feel uncomfortable it’s them. Get rid. A child comes before their dad your partner anyone. No one has a right to talk about your child except you. This is why so many couples break up as one parent is too embarrassed uncomfortable ashamed and fear no control. Let them go or push them out. It will get worse in time. That’s your child! MIL is irrelevant!, She sounds gross. Tell her to stop acting like a pedophile or she can leave., I'm so sorry, she sounds terrible. I know people on Reddit tend to jump to divorce, but I honestly see that as at least a possibility here. Divorce is not a failure on you or anyone else. Your daughter deserves to be treated with respect and that means not sexualizing her stims. The fact that you said your husband would make your life hell if you set boundaries with her is not okay and tells me you're in a situation that you and your baby need to get out of. It's only going to get worse. He's a grown man, he chose to marry and have a child with you, he needs to prioritize you over his mom, especially in situations like this. And, am I reading this right? In a comment, you said that he asked his mother if she was going to breast feed your baby? All i can picture is that scene from White Chicks where he says the snobby girls mom is so old that her breast milk comes out like powder and poofs out the flour stuff.
I am just so sorry you're dealing with this, OP. Your baby sounds like a cutie and I bet she's really working her abdominals and helping her core muscles, which she will need for her entire life. Not comparing at all because yours is totally different, but just for context, all my baby nephews play with/are fascinated by their penises. It's not sexual at all, just an exploration of a body part. If there's nothing sexual about that, why would a child stimming and working her muscles be? They have no concept of it at that age, that's why we never got an x rated episode of The Wiggles., My daughter has done this all her life and yes her other stims seem not to change but as she's got older she does it less. Now she only does it if she wants to go sleep or is in an extremely good mood.
That said, it is a stim I used to try and distract her from if we were in public simply because you don't know what pervert is hanging around thinking like your mother in law.
Now, as for your mother in law, sometimes you just have to tell them to let you raise your kid and keep their opinions to themselves. If you feel a boundary needs to be set then do that., No advice but I just want to thank you for sharing. We’re in the process of getting evaluated and I’ve recently joined to educate myself as much as possible. This is something my 2yo boy does when he gets super excited and only lasts for a few seconds. I had no idea it was a stim!, Yeah. It's innocent to the child, but it's still a stim that won't be appropriate for very long, for safety issues., My son did this at 2 also. We redirected. Of course they're not doing it in a sexual way, but it's still not an appropriate action , especially as they get older. He would also try to do it on someone's leg, which is obviously awkward. He's 5 now, and while it took a lot of consistent redirection, he no longer stims in that way., My son’s stims change every 6months to 1 year, I appreciate what you’re saying here as I hadn’t thought about it like that! If she starts doing it in public I’ll definitely have to redirect it :(, This is interesting, Very well put, thank you!!, My husband thinks the sun shines out of …. I’ll let you finish that sentence 😂😂😂 my MIL is the mother in law from hell!! We live with her and she knows just how to turn my husband against me to get her own way!!
My husband is just as bad as her. When I was pregnant with my daughter he asked her “mum are you going to breast feed the baby” ???? Genuinely feel like I’m going mad sometimes here, Yeah my mother in law! She cares more about what people think than anything! She’d rather me deep clean her house and cook for the whole family everyday rather than give my two kids (2& 1- possibility both are autistic) the proper care and attention they need!
And thank you! Hopefully it will pass and she will find another safe stim, until then she is only a child and two years old!, We live with her and it feels like we are constantly together which only makes matters worse!!! I feel like I can’t say anything to her because my husband is very protective of her :( but I do feel like he would be very angry and upset if she ever said anything about my daughters stims to him.
And that’s a great idea, thank you!!!
Your daughters stimming sounds cute!!, >I’ve never met anyone else whose kid stims in such a similar way
One of my students does this. It's his go-to stim when he's feeling overwhelmed and needs to calm down. I'd never seen it before working with him, though., This is so true!!! And as long as our babies are safe who cares what their stims are!!, ITS TRUE!!! I would love to but the minute I step out of line with her my husband would make my life hell. Him and his mum are inseparable even though they behave horrendously towards eachother, Exactly! I’m just relieved when she does this that she’s not being harmful to herself, I love this!!!, Leave? They live with her!, 👏🏼👏🏼👏🏼 this!!!, I loved this comment!! Divorce has been on my mind for a couple of years now:(
I don’t know how anyone could begin to think about sexualising a child. Let alone their grandchild :(, Your MIL is being gross, but how would a divorce fix this? She would still be your child’s grandmother. If you want a divorce for reasons specifically related to your husbands actions and inactions, sure, but you can’t get rid of a creepy MIL by divorcing your husband.., You’re absolutely right about being in public!! And my mother in law isn’t one for boundaries :( especially if my husband is on her side then it’s her way or the highway. It’s even a problem for her husband (my FIL)
She tells me how to raise my kids and gets annoyed when i don’t agree with her :(, How did you redirect that stem? Because my 6-year-old still does it. I just don't know what to do to redirect., That's interesting. Though we've added in some and had some transient ones, the main ones established at the age of the ops child have remained for us.
One is also one that requires 'inappropriate' contact. Hence, not only did I speak with regard the safeguarding, it's with experience of managing this. And though I've managed to move the stim to primarily in 'private', it's taken nearly a decade!, It's developmental normal. We just need to teach appropriate time and place., He asked him mum if she would be breastfeeding your baby??? Did I read that right??, Jesus, I'm sorry. I hope that you found the strength to get out of this situation., Wtf!!! That is messed up!!!, That’s really weird. Why would he think his mom would nurse your baby?, Stay strong., I always liked my daughter’s stims. I think the hip stims are super cute, personally. I always think of little kittens and how they play when I see it in action. It’s a great stim too, in the sense that she doesn’t hit her head or hurt herself or others.
I’m so sorry your husband is so protective of his mother. In time, maybe you two could approach the idea of couples therapy to help talk this out? He should be able to listen to you and your concerns without you having to worry about his reactions. Even under a shared roof. He married you, chose you as his partner and wife, after all - and sometimes that means changing relationship dynamics - but should always mean supporting you and your child in matters like this.
I kind of hope home does catch his mom being snarky about your daughter’s s, because that behaviour needs to be nipped in the bud. I do hope, in the meantime, you can find fun things to help redirect the behaviour for now. It may warn you a bit of peace, if it works. You sound like such a lovely momma and wife, and I really do hope things work out for the best. Sending hugs to you and your family. 💕, It seems like it’s an unusual stim, for sure. Our paediatrician had never seen it, and brought in her student-doctors to observe and witness, as all stims aren’t catalogued in training materials. I personally think it’s a good stim to have. They’re less likely to be a danger to themselves or others, they can safely regulate as needed, and I can call my kid my little kitten (she reminds me of those kitten videos where the kitten raises their attack paws in surprise)., Sounds like you have an abusive husband, Buddy in my state, if you can prove someone was a pedo you don't get charged with fixing either verb in that sentence., You sound like a fake account, If divorce has been on your mind for years, it's time for a serious talk with your husband and if he still doesn't see it, it's time to just throw in the towel. No shame in that whatsoever., She said she's been having a lot of issues with her husband other than this and he clearly isn't prioritizing her or their daughter. Op herself said she's been thinking about it for years, but he makes her life hell if she talks about it. That's not okay at all.
Did I say this is the solution? No. But, I can tell she's not in a healthy relationship and it's not healthy for her or her kid to be in a toxic household., I dont envy you. My partner backs me 100 % because he knows I spend the most time with our daughter and I'm the one who knows what helps her and what hinders her. Even when my MIL is trying to stick her oar in.
It may be worth talking to your husband and telling him that you need support on this and that you need his mum to be less involved in your personal issues including how you raise your kids. Its nice that she feels she has knowledge to pass on to you but that doesn't mean you should or have to take that on board and also should be able to say when her input is inappropriate., For my son, he did it typically when he was sleepy, so we would stop him and move him to a different area, hold him if he was tired, etc. we just made it a consistent, hard boundary that it was inappropriate to do that in a public space (the living room) and was an absolute no to do ON someone. I would take him to his room for privacy but he didn't usually want to continue. There were a lot of tantrums and meltdowns over it honestly, but I made it my hill to die on 😅 he will still very very infrequently do it on a chair in the living room, but stops immediately when corrected and does not get upset. He hasn't done it in awhile though, probably at least a year., Yes you did!!! I’m still not sure whether it was a joke or not but I know it wasn’t
Even if it was a joke it’s just not funny, just weird, Thank you so much!! If you look at some of my previous posts you might see more about mine and her relationship as well as mine and nut husbands, Tell me about it 😭😭, I to this day am completely and utterly confused. And disgusted. She likes to act like she’s my daughters mum, Thank you so much 🥺🥺 me and my sister in law do put up with a lot from her for the sake of our husbands!!!
He unfortunately definitely would not be interested in counselling otherwise I definitely would love to give it a go as there are other aspects of our marriage that upset me too
And yeah!!! I would love for him to hear her say about my baby’s stims but she would never say it around him, An issue with stims like this can be if they involve other people (like OP mentioning the daughter does it on their leg). It's fine with parents of course, but I've had situations where students were making other children really uncomfortable by rubbing on their legs, etc. That doesn't mean stopping the stim, but in the long term that's a part that may need redirection and explanation.
That's the case with every stim that includes other peoples bodies though - boundaries and respecting other people's bodies is important to learn. When stims that may be simulating sex ONLY happen on other people's bodies, or are a response to children making someone else upset, that's a big red flag for child abuse. Otherwise it's totally developmentally appropiate, stims involving private parts are pretty common as they have lots of nerve endings - it's not sexual for children, it's only concerning as a learned behavior., Unfortunately I do :(, Buddy in my state if a parent allows a pedophile to have access to their child that’s neglect and the kid ends up in foster care. Be careful what words you throw around cause that shit can bite you in the ass., 😂😂😂😂😂 I wish, I’m going through the mindset of “but I love him” etc but once that goes I’m sure I’ll be out that door quicker than I can say boo!! Whenever I try to talk to him about leaving because I can’t cope he tells me to go then and will be mean to me for a few days until I apologise and say I didn’t mean it and now it’s got to a point where I don’t even want to bother communicating with him as it just ends in fall outs and fall outs lead to me being miserable, That is incredibly weird for him to even have that thought, whether it was intended as a joke or not. It’s also incredibly (probably intentionally) undermining to you as the child’s ACTUAL MOTHER. I read this and then read some of you other posts op.
The details that horrified me and are probably not even reflecting the full extent of his abuse are;
Demanding sex while you were in active labour (this one is literally beyond comprehension, it’s disgusting, I’m only glad it didn’t escalate to rape).
Kicking you in the stomach 3 days pp.
Making you sleep on the floor immediately post partum.
Selling your gold and giving the money to his family (or losing it on a house bid, whatever happened is irrelevant, it was the stealing from you that mattered) while you were in hospital.
Strategically and forcibly isolating you from your parents/ family.
There was much more in those posts, and I have no doubt that what you wrote is only some of what you’re experiencing. OP those details/ incidents are horrific. There is nothing mild or ambiguous about this behaviour. If you write a book on your experiences it would sell; I say that to illustrate how ABNORMAL this is. You CANNOT let yourself normalise this any longer (fuck that 20% you’re clinging to- IT IS PRETENCE, he is pretending to be a decent human for that 20%, it is NOT genuine. Believe the 80%.)
I say this from a place of love OP. Staying in this situation is a decision that will hurt your children. If you can’t get out for yourself, you have to do it for them. I also have an autistic non verbal 4yo and a 2yo who is undergoing assessment. These children are incredibly vulnerable, YOU are their advocate, their agency, their protector. They can also be very challenging children, they WILL test his patience, and he is an incredibly cruel and abusive person. The thought of them staying there frightens me to the point that if I knew you personally, I would try to intervene in this situation.
Get. Out. Now. Go to your parents, today.
Edited., Wow, It sounds emotionally incestuous. I haven't read any of your other posts, but this one has made me extremely uncomfortable. I don't have any words for their behavior or sexually deviant ideas; It's absolutely not okay to sexualize children. I don't know how you're surviving this as it sounds like actual hell., You might think about documenting all this. Might come in handy later if you decide to leave that situation., Everyone down voting me for saying that I think my daughter’s stims are cute do not seem to realise that I say this from a place of love. I have my stims, too, and they’re not nearly as endearing. I love my daughter and she’s always been a spark of joy and sunshine in my life. When she is comfortable and stims, I love her as she is. I find her cute. I find her cute when she gets food on her face (and I always clean her up and care for her). I find her cute when she is tired and snuggles into her bed and pillows and her eyes flutter to sleep. I find her cute when she stims, and she knows I will let her exist as she is, because I’m her mom and she needs to have those sage spaces. I wouldn’t change her for anyone else, stims and all. She’s a wonderful, funny, sweet, intelligent, amazing little human bean, and I am blessed for having her in my life. I am reminded of kitten videos because that’s what a comparable example of her stim genuinely looks like to me, and I find that cute.
OP, I do hope that you find a happy solution to this. I’m sorry that it’s been a bit tough in your marriage as well. I do sincerely hope that you and your daughter can work together with the suggested redirections others and myself have offered. I wish you always happiness and joy - because mothering is a tough gig, and you and your daughter deserve that kind of peace and love., This is very fair and reasonable. I did read that part late last night, and I have to admit that I failed to respond to the part where the stim does occur on her leg. It’s true, this kind of thing wouldn’t bother me as a parent (you get used to things, I suppose) but definitely could/would be problematic for others. I didn’t think about this being in any way sexual (my daughter has a hip/thrusting/crunching stim, too, and she’s had it ever since she was a wee little baby). There’s nothing sexual here, in my experience - but as you say: it could be indicative of something worse (and that’s frightening). There is also, the fact that this is very innocent and another adult is sexualising it, which also isn’t fair or right. Man, it’s really tough to navigate these things! I hope the suggestion of redirecting the behaviour can help OP., I suspect people who are downvoting you this don’t understand the dynamics of abuse. But since you’re aware this IS abuse, I would encourage you to start thinking of your exit plan. This is not a safe environment for you or your child, and unfortunately you have to be extra vigilant at modeling healthy and safe relationships as autistic women are more likely to be abused. What she sees now is likely to be repeated. Hopefully that helps give you the strength you need., Failure to protect is a huge deal because there's not much to be done to prove you're now a protective parent or have better sense., You sound like your in an abusive relationship. This isn't what love is. And,you can still love him and stand up for you and your daughter. Don't listen to him if he begs you to come back and if he's the type to threaten suicide, tell him it's not a joke and then call the police. Whether he actually wanted to do it or just to manipulate you, it is not on you what happens to him. He is a grown adult making grown adult decisions and unfortunately, his decision is to be terrible to you and to not have any boundaries with his mother.
Do you want to go through more years of him making you miserable because he doesn't want to grow up? You can still love him, but that does not mean you have to be with him., Absolutely. Get out!, Please get out! And don’t tell him you’re leaving, This is just a dip in the ocean!!! She makes my life absolute hell!!! And my husband is no better, That’s exactly what I was thinking!!, Your daughter is very lucky to have you!!! You clearly love her more than the world and expressed that beautifully!!!! Thank you so much for your kind comment!, This is eye opening 🥺, Have you considered what actions you need to take for your own and your child’s well being?, I wish I could just shut down my MIL. I freeze up for some reason when she’s says her crazy shit . Ugh, I hope you find safety!
Right now she’s young - but she will start remembering and normalizing harmful behavior soon. (My mom left before I was a teen, but that unfortunately didn’t stop a series of abusive relationships for me despite diligence to prevent them.), I’m so confused as to what to do, She truly bullies her other daughter in law, Within that confusion, there may be a part of you that does know what would be a good next step. Maybe you can just let that part be heard. This doesn’t mean you have to take some action you’re not ready to take right now - the first step might just be allowing yourself to hear your inner voice. (Also, therapy is helpful for many people.), As someone who's been there MAKE an ESCAPE PLAN. And stick to it. Before those kids are any older. Call the local womens shelter. Heck call mine (merryman house 270 443-6001) They can definitely help you make a plan
National domestic violence hotline. 800-799-7233
Text start to 88788 if he doesn't go thru your phone. Sometime when you are away from him so he doesn't question who you are talking to
The hotline.org
Please don't let these vulnerable children get abused or believe abuse is normal.
There are resources to pay for a bus ticket to get you back to your parents.
I definitely wouldn't tell him I was leaving. Just set a plan and disappear. And then get a lawyer and fight for those kids
You have to protect them. Especially the nonverbal one.
|
Main reason I think 6F possibly has autism
|
So today is just another day. Daughter just turned 6 two days ago. She has a bit of a cold today but otherwise is herself. She was playing Roblox on her iPad and got really frustrated at a game she was having trouble with.
Her frustration pretty much plays out the same way every time. She kinda makes the “argh” sounds that anyone would. Eventually she gets really pouty and shoves the iPad away. Then when I suggest that we find another game she will break down crying. The crying then leads to whiny vocalizations and she doesn’t really want to discuss or communicate anything. To bring her back I have to hold her and love her up for a few minutes or she can’t self regulate back to happy.
These moments of dysregulation don’t seem to ruin her day any more - she was even more dysregulated 12 months ago when she started school for first time. But they do take 10-15 minutes to work through and co-regulate. At 6 I am assuming this is due to underlying issues and we shouldn’t rely on her “growing out of it” and thinking her brain will mature and by 7 and 8 she will all of a sudden be able to regulate?
Anyone have thoughts? Hopefully someone has both ASD and NT kids that had an NT kid they were worried about at 4,5,6 and they grew out of their dysregulation????
|
If emotional dysregulation over video games is the only thing, I would say that is within the range of neurotypical and would not suspect autism or anything else., This sounds pretty typical for a 6 year old, and maybe you should lower your expectations for her regulation skills. And also perhaps teach her some to do independently instead of relying on you physically to regulate., My daughter was very much like that from 5-9. She is not autistic, but she was diagnosed with ADHD and DMDD. We gave medication a try, and it helped a lot. She still has her outbursts sometimes. A big part of helping her was identifying when she was getting close to blowing up over something and learning to redirect her to something else in a way that didn't piss her off. Was not easy and doesn't always work, but it has helped a lot., I think I have reasonable expectations that a 6 year old should not be melting down daily at 6. We have done numerous different parenting techniques to teach her self regulation but nothing has so far worked. I will say she was much worse 12 months ago but any progress has been painful fully slow. If anything, the longevity of the melt down is shorter and maybe a touch less frequent. She also communicates a touch better. So there are glimmers of improvement but Still feels over the top for 6., For me the main sign I saw in my 8 yrs old son (diagnosed ASD lvl 1this year) was that he always went on and on about his special interests. Also, speaking inappropriate to the conversation. He does this all the time. He's so sweet tho. His meltdowns do happen, but he's getting better. If your daughter also speaks inappropriate to conversation, then I'd say get her evaluated. Otherwise, she is probably neurotypical and still learning to control her emotions., If she has no social deficits or repetitive behaviors, I would definitely not be thinking autism (those are the core domains.) I also believe that having an incorrect label can really damage and traumatize a kid. I guess it couldn’t hurt to get her evaluated though., I thought I could chime in because I have a 6 year old girl who was diagnosed with very mildly presenting ASD at 4.5. It is so mild and borderline that I often feel skeptical about her diagnosis. She is doing well in a mainstream Kindergarten classroom, she is very verbal, and very outgoing/ socially bold.
She has some sensory issues, is rigid with routines, and is definitely quirky. But one of her main struggles is with emotional regulation. The difference from what you are describing is that When she gets upset/frustrated/angry/overstimulated, the resulting meltdown can last HOURS. A run of the mill tantrum for her is still like 30 minutes or more, and can be as long as 3 hours. This includes screaming, scratching, hitting, biting, throwing things, etc. 10-15 minutes of dysregulation wouldn’t even register for us.
Please do talk to her doctor, though! I never would have thought autism until her pediatrician, then a psychologist, made the referral for evaluation. It can look all kinds of ways, particularly when it comes to girls without language delays.
In any case, good for you for working with your child to help her build emotional regulation skills. It is definitely harder for some kids than others, ASD or not., The frustration in video games is just one example. It could be any activity - legos, etc.. or just being dysregulated in general and melting down from an over reaction to any number of normal daily interactions., Did she have any communication issues? My daughter can shut down on occasion if you’re not getting what she is trying to tell you, whether it’s a statement, need, or want. I guess it kinda falls into the frustration category? But instead of repeating what she said or otherwise using words to help you understand, she just starts making whiny vocalizations and checks out. Again, less frequently than 12 months ago but still happens at a good clip, especially during the school year., I wouldn’t say she speaks inappropriate to the conversation, she is quite the chatterbox, asking lots of questions and telling us all about the things she is currently doing. She does tend to ignore people sometimes, either outright when they ask a question, or interrupts them and starts talking about something totally unrelated. No doubt she is behind emotionally. We just can’t reconcile if there is an underlying root cause or my girl is just behind and will catch up., Th core issue is emotional dysregulation with almost daily melt downs. Within this, when she is upset and either melting down or shutting down she has a tendency to repeat a phrase or a word. Other than that she has no repetitive nuances about her. Not sure if that is considered a repetitive behavior.
Her social deficits manifest by her challenges self advocating and daily instances where she will ignore a family member speaking to her. I.e when she woke up this morning we got her settled and I asked 10 times what she would like for breakfast and she ignored me and just watched her show. Another example is the other day she was mad at her sister for not playing with her. I explained to her that it’s because she did not actually ask her to play anything, and if she does, I’m sure she would stop what she’s doing and join you. She refused to ask her own sister to play and I had to do it for her to get the action started.
There are several examples of this daily so not sure if the severity really falls into the 2 core ASD qualifications but she does seem developmentally behind for just turning 6., This was very insightful and helpful. And yes, we would only have a meltdown for hours if we did not intervene and help co-regulate her. If we love her up quickly we can have it resolved in 10-15 minutes. But if we ignored it it would definitely go on for hours. Not sure I’ve ever seen her calm herself down without our help.
We feel very borderline as well but once we felt like we were walking around on eggshells again trying to avoid meltdowns we felt the need to push forward., Does she have "Persistent deficits in social communication and social interaction across multiple contexts" and "Restricted, repetitive patterns of behavior, interests, or activities"? Does she have sensory issues?
If not, it probably isn't ASD. While meltdowns are a part of ASD, there is a lot more to it. Being emotionally immature for their age and having tantrums about various things in and of itself is not ASD.
I would encourage you to talk to your child's doctor though. Girls especially can be very good at masking autism so it is possible it could still be ASD even though it doesnt really sound like it to me., When she is really upset, she has trouble getting out what she wants to say. She often doesn't even try because she is too frustrated. I give her time and wait until she is calmer to try to talk to her about how she's feeling. Her doctor told me that was the DMDD. It has improved with age and experience. She is better at recognizing it herself now, and she can tell me she needs a few minutes alone to calm down., My son can be a chatterbox as well. Talking about something totally unrelated = speaking inappropriate to the conversation. This was the main sign I saw in my son with almost everyone he interacted with. If you see this happens a lot, then it might be worth an evaluation just to be sure. When my son finally got his evaluation, I was right all along about my suspicion that he's autistic., To me, those behaviors sound kind of normal for a 6 year old. Little kids don’t have a developed theory of mind yet. I saw you talk about an example of her “repeating a phrase/word” in another comment and it seemed like something that was completely normal. Some kids might just be a little immature, or developmentally behind without any sort of condition. It can’t hurt to get her evaluated, but make careful that you’re not falling into confirmation bias. Also, emotional dysregulation isn’t a hallmark of autism, it can be part of so many other things., I just read some of the other posts in your post history, and I wanted to update my comment. some of the posts about your daughter really do sound like my 6-year-old daughter who was diagnosed with level 1 ASD. The thing about a half hour of crying because of not doing the “game” with the gallon of milk correctly sounds a lot like my daughter. One time it was 2 hours of screaming and aggression because of exactly how we put a pizza box in the refrigerator, for example. Sometimes she gets stuck on doing some seemingly arbitrary thing in a very particular way, and that is what causes a lot of her meltdowns. My daughter is very hard to soothe, though- she often just has to wear herself out- , but part of that is just her personality. Also, the fact that she functions well at school- my daughter struggled adjusting to pre-k, but is doing l well in kindergarten (she struggles with impulse control and being a stinker, lol, but other than that things are going well).
Anyway, I just wanted to clarify my response after reading your other posts- I think it is really a good thing that you are doing the evaluation!
Best of luck!, She would be considered “shy” at times but her teacher has noted that she is average or above average socially, most of the time. However, she does ignore people sometimes, as well as myself, and it’s like you’re talking to a brick wall. She also has some trouble self advocating and will even not go to the bathroom while being watched with anyone but parents.
She’s not very repetitive in interests or activities, but when upset will say the same thing over and over at times (I.e if she’s fighting bed time and I just pick her up and take her she will be crying while repeating “I don’t want to go to bed” on an endless loop). She had more sensory issues at 3-4 than she does now at 6. She had a rough pre-k transition and would often melt down over the way socks fit or clothes fit. Also hated when something spilled on her. Those issues are 90% gone.
All in all she definitely has some red flags which makes you think ASD or ADHD but I also see many areas of improvement since 12 months ago. I would be worried if improvement stopped here but alternatively if it got better over the next 12 months we may not feel like we are in a bad spot., So what else were you seeing that led you to believe autism?
Once my daughter is engaged in the conversation she can have a back and forth on point. But if it is me trying to “parent” and going on to long she will literally lose interest and interrupt with an obviously unrelated start to a new conversation. So not sure this counts as inappropriate to the conversation. But she does ignore my questions some times too and just not engage in the conversation. That happens like once or twice daily.
What she really does that seems odd at 6 is that she gets frustrated or angry over perceived slights that don’t exist. Or basically anything that works out unfavorably to her she immediately defaults to blaming someone else or saying it’s not fair even if it is well within the rules of the game. She doesn’t melt down over this stuff most of the time any more but she still stops the game to whine and we constantly have to try and explain the rules and why it’s okay., Thanks. They sound very similar with mine just being slightly easier to soothe and pull out of her funk. I dunno. The mind is fickle. I still can’t wrap my head around the irrational nature of the outbursts. She actually started sobbing earlier because she wanted her sister to stay in the same room as her (they weren’t even playing or doing anything together) but she wanted to go upstairs and see mom. That didn’t turn into a meltdown, but the overblown reaction is just another quirk to a quirky day., One thing to keep in mind about restricted and repetitive-- it doesn't just mean being obsessed with a special interest or hand flapping/toe walking or other tics-- for my kid, it means being very rule bound and stressed when he sees other kids "breaking" the rules and asking a lot of anxious sounding questions about pretty innocuous schedule or routine changes.
Deficits in social communications aren't always obvious in a level 1 six year old either. A lot of it can look like not being flexibly able to code switch in different settings-- speaking like a "mini adult" with very formal and high level grammar on the playground or using aggressive playground talk in a classroom to people who are not your close friends. A lot of six year olds are figuring this out, but an autistic 6 year old, even one without language delays, won't get it even if they are explicitly told and even when they do get it, won't generalize the point., Ok, that is interesting context. My son was assessed twice for ASD (and each time we were told he doesnt meet criteria) before being diagnosed with ADHD. But he definitely has some ASD traits as do I and as does my dad. It really is a spectrum and I do believe there is such a thing as "sub-clinical" autism.
One thing to consider though: what would an ASD diagnosis do? If they are borderline, like some of the men/boys in my family, ABA is overkill. You don't need an ASD diagnosis either in order to get an IEP and a BIP in a public school, which may be all they need. You actually don't need any diagnosis or label at all. You just need the school to recognize that there is some kind of delay/difference.
Anyway, I encourage you to talk to your doctor. An assessment won't hurt anything., That was the main sign and his rigidity what I thought at the time was possibly OCD, oh and he had trouble connecting with peers (ie., he always played by himself at recess). Other signs in hindsight were that my son didn't start speaking until almost 3 - he was evaluated just before he turned 3 and his report noted a borderline delay. He has low muscle tone. His bowels were very loose as baby and toddler. He also had autistic meltdowns quite often throughout the week. He's gotten better with those though. He has sensory issues, doesn't like certain clothes and some loud noises.
You know your daughter best. If you think she may possibly be on the spectrum, you'd be doing her a favor by getting her evaluated. I was relieved when my son was diagnosed because I finally had an explanation for why my son is different and thru his diagnosis I'm better able to give my son the support he needs to thrive at home and at school - not to mention my son is aware that he's autistic and more accepting of himself., Also she is not rule bound per se. I don’t think she is stressed when kids break the rules but she is certainly willing to tattle tale, a lot. She has no concept of the unwritten rule there :-)., I would say my daughter speaks pretty normal for a 6 year old. A good mix of speaking young, speaking her age, and speaking slightly above her age. Her social communication issues, if this falls into that category, would be that she is unlikely to instigate play, but now that she’s in KG she will actively play with the rest of the class. In pre-k she did chalk by herself almost every day at recess while most other kids ran around and did not engage much until the end of the year.
Also At times, she will complain that her sister is not playing with her but simultaneously will refuse to ask her to play something and make me do it for her. This all feels like a lack of self advocation and inability to communicate for some reason., Agreed. She is likely so borderline an assessment may not be meaningful. But we want to ensure we unlock any resources we need as well as have as much relevant Information for the therapist as possible. The behavior really does tear apart the family. It’s hurting her relationship with her sister too. She just views her as the annoying crybaby sister now., Yes, we are getting evaluated but I think it’s so borderline it could go either way. But I want some help and direction so just going down the path will help either way.
|
Major Eye Roll! Note from school
|
Still waiting on official testing (state said by end of year). She goes to a special needs school. No one will say she's non-verbal because she talks to people she trusts.The note from the school nurse says "unable to test. Student not able to follow instructions/orders". REALLY?! HUH! REALLY SHERLOCK! 🙄🙄🙄🙄
Am I just being defensive? She IS smart and she DOES follow instructions! So now, even though she has eagle eye sight, we have to make her go to another appointment just to prove the nurse wrong?! She talks to her teacher, and they say she is a great student.
(She never spoke during either speech therapy place. And doesn't speak to the schools speech therapist, even after 6 months)
|
I actually just got one of these and had a similar reaction (the “no shit” was my first thought too!), though my child is in public school. I am 100% sure, however, that they have to document this and probably have to use specific language (because yours and mine are almost word for word the same).
I used to work in the eye care industry- you’d be amazed how many kids never get eye exams, until something is medically wrong (like getting something in their eye) or they are able to indicate they can’t see. Everyone should get their kid a yearly exam (or at least just one exam) just to have a baseline, even if their vision isn’t impaired. pediatric optometrists/private practice optometrists will know who to recommend with a nonverbal child. It gives the doctor something to compare with if you do go in and there’s a change/problem. Also gives kids a familiar face/makes the eye doctor less scary if they have to go in for something like pink eye or an abrasion!
I had to smother the urge to email something snarky to the school too, I feel you OP. It’d be nice to get a note that says “child needs to be seen by a doctor that can provide an accommodating/personalized vision test”. A lot of kids with amblyopia get missed and lose vision/vision develops abnormally in one eye because they don’t get exams until something is glaringly wrong. I had a patient not get his first exam until 7, neurotypical, and nobody knew he couldn’t see out of one eye until that exam.
Pinning this as a general “get your kids to an eye doctor”, even infants can get their vision checked! If you have vision insurance in the US it’s usually covered, same with state insurance., Idk, i kinda think you are being a little too defensive. I work with school nurses and well this is their job. They have to be very matter of fact with documentation. You dont HAVE to go see an optometrist/ophthalmologist if you dont want to. As long as shes not showing signs that she cant really see, she should be fine. Our school nurse also used the photo screener and it determined my son had astigmatism. I took him to an opthamologist which confirmed the diagnosis. He wears glasses now. I wouldn't have ever known he needed glasses because hes non verbal and didnt show any signs like squinting., This makes me wish that all pediatrician offices had the device that mine got 3-5 years ago. It shows flashing lights (so even kids who don’t do eye contact or “follow” directions will look) and then it gives a range of eye sight. It caught my littlest (who’s under 1.5 lol) nearsightedness. And had passed my ASD child with no problems. I do want to say, 1) I hear your frustration - and it’s completely valid. 2) Please remember, this nurse is just doing their job. Yes, it SUCKS that they haven’t connected well enough with your child to help them through this, but give that she’s the nurse and probably hasn’t seen them
much, it’s also not her fault. She would be negligent if she DIDN’T bring this up,, I feel you. My son was premature and had to be screened every 6 months for retina damage until he was 4.5 and had an exam under anesthesia. He wouldn't sit still or let them look in his eye, so they couldn't rule it out, unfortunately. It was so frustrating., They are required to do these tests and have to record some kind of result. I’d say you are over reacting., Reminds me of when we had to test our son for possible hearing issues and we had to go to 3 different specialists for someone to finally just make a loud noise to see if it startled him...
I have no idea how we'd do an eye test..., I feel so bad for you. I got a leaflet when my 4 year old started a Sen unit on a mainstream primary site. It had a check list of all the things she should be able to do for her age. She’s non verbal and has to have all her basic needs met. Kind of kick in the stomach., My 2nd son is deaf and when the school found out they said that my son with ASD must also have some hearing loss due to how poorly he follows instructions (they had tested both his hearing and vision less than a month prior and they where both perfect). I just stared at them lol, I don't see this note as a big deal. It's factual, they couldn't complete the exam due to the reason stated. If anything it makes it easier to see a specialist because a routine exam was attempted and couldn't be done.
Both my kids have had to go to a pediatric eye doctor to get a routine exam check.
The specialists are able to do exams without kids needing to follow directions well. One of my kids actually needed glasses, it caught me off guard. I honestly didn't think he had any issues seeing.
I noticed you're only commenting on posts looking for validation, so I don't expect a response or a lot of up votes. Not everything is an attack on our kids, they have to document why they missed a kid's exam., Seems kinda on the school. My class is 8 pre-K students with very high needs and they were able to get them all with the photo screener. Eye roll seems appropriate 🤣, I am right there with you with the eye rolling.
Just had the same with my 5 year old, pre-verbal, level 3 ASD and ADHD for a cognitive assessment... Like no duh she's not going to do your puzzles or draw when you ask her to she only does what she's interested in, when she's interested., Rolling my eyes with you. Reminds me of the “failed” hearing test at his 4 year appointment when they asked my son (very limited verbally, does not understand receptive instructions with multiple directions) “when you hear the sound in your left ear put your left arm up. So show me what are you going to do if you hear a sound in your left ear?”
Grrr. I try to evade these tests if I feel they are unnecessary. I’ve never had a doubt about my son’s hearing. Developmental peds wanted to have the testing to rule it out. Never again. Those exams are so stressful for him too. Sorry this happened!, Definitely infuriating!!, They do THE MOST behind the eye exams! My kiddo did see the optometrist after SEVERAL LETTERS via mail and email from the school nurse…
He was given a rx for glasses but won’t wear them because of sensory issues. It’s something that I will have to gradually introduce him to…
The teacher constantly reminds me that his face is too close to his paper and he really needs glasses. I’m like… HE WONT WEAR THEM!
Even TODAY!
Like do they not understand neurodivergent kiddos!
(((Hugs to you and your sweet kiddo))), How old is your child and have they already seen an optometrist before? My kids got an annual optometrist visit between the ages of 1-5 where they dilated the pupils and after a waiting period (30-60 mins? Can't remember anymore) the optometrist could look at the structure of the eye and determine whether it was normal development or there could be something concerning (since my kids couldn't do normal eye screenings or tell us if anything was wrong). Those stopped at the age of 5 for both kids per the optometrist's recommendation because by then the eye is developed that they can rule out any reasons for concerns.
So I ask and explain all of this to say that when my kids were inevitably tested at school and they couldn't perform the test was able to push back and say that they've had their eyes examined by optometrist for x number of years and unless they had any specific concerns, I wasn't going to take them to the optometrist again.
Sometimes they truly don't understand how burdensome a seemingly simple appointment can be for our kids and us. Most of the time they just have to document that they did recommend further evaluation to protect themselves. Good luck!, They sent us a similar letter in preschool. I think they didn’t even try to test my youngest. We’ve had her vision tested so I’m not worried, but it is kinda funny., We have the same note from the hearing screening. They’ve tried to screen her two times but she won’t cooperate with the person. She’s almost 3, non verbal (but is that even a diagnosis), and can clearly hear us when we talk to her. I don’t want to take her to the ENT for a special test. Ugh., I think you're maybe being a little too defensive and taking this too personally. If your child was unable to follow the nurses instructions to do the test and the nurse does not have the ability or resources or time to accommodate what your child needs in order to perform the test... I don't think it's unreasonable for them to ask you to take them to a professional who can do it under conditions that are more accommodating for your kid., I failed smothering the urge... I emailed her teacher last night. Several paragraphs and bullet points. I even cited sources from medical journals. 😬
At drop off just now, the nurse ran past all the other parents to come to me. She asked me to just step inside for a few seconds to sit with my daughter for a retest. It was this box/device thing.(I wish I had remembered to ask what it's called to share with other parents) My daughter sat down in the chair while the nurse showed her the box. I squatted down to sit on the floor next to my daughter. By the time I was sitting, the devise had already scanned my daughter's vision. "That was it?!!!" They said yep, told you.
I don't regret my email because it went in depth about WHY I was frustrated. If we didn't try again, the eye doctor would have been a huge ordeal. Potentially resulting in sedation, like how she has to be sedated soon for her dentist appointment. My daughter has heart problems, so anesthesia is a big deal because it could mean "sudden cardiac death." I know they have to do this. I know they have to keep record of everything. But hopefully now, they'll offer other parents a retest rather than only suggest a doctors appointment. (And we live in a small town. Her teacher said in their 9 years of being special ed teacher, they haven't heard of a good eye doctor in town for our kids)
My daughter passed the vision and colorblind test within a few minutes (all I did was cheer her on). Smothering drone mama for the win? 🤷♀️😁, I agree. I read the note as "We couldn't finish this test, so you'll need to go to an optometrist to finish it instead."
So either go to an optometrist, ignore it, or ask the pediatrician to do a vision screening next time you see them., I know, I know, you're right! Thank you 🥰 This is exactly why I bring baked goods for staff weekly!
I desperately wish I could find that device for her to test with!!, I just had to schedule an under anesthesia dental appointment today! 🫂 Mine also has chronic ear infections and a heart arrhythmia, who is in danger when undergoing anesthesia. I feel like that Spiderman meme trying to coordinate doctors present during anesthesia.
Thank you for understanding and showing your support. Should I email her teacher?, Right? The school nurse has 100 kids to see and she just has to fill out a form with a standard response. If you know your child's hearing is fine, then don't worry about it. Throw it in the trash., OMG! 🤦♀️🤦♀️🤦♀️🤦♀️
Well, heads up: everyone just seems to want to sedate them for everything!
If I prep her, walk through all the steps of the appointment, she does better. But any deviation from prep immediately ends her cooperation. Then she requires payment in stickers, suckers, or prizes.
(Prep example: We walk in and talk to the front desk, we tell them your name, we sit in the waiting room until someone calls your name, we walk to the end of the hall, you stand on the scale, etc. Etc.), Why has school become "fit into our system or else"? There's zero space for creativity, flexibility, or anything mildly supportive of an individuals identity? And don't college applications WANT all that? They want unique individuals! Why aren't hobbies/passions encouraged? I used to be a youth minister and have time over time seen their souls spark disappear through public schooling. You know what I mean? Like when I loved to make crafts but was told it's only for old people, it's dumb, and a waste of my time. I never planned on selling my work, but I do enjoy making it!! If someone loves Minecraft, won't that make them a great engineer?? Or graphic designer? Or heck, help them manage every day anxiety?
I once had to console an 8th grader. He got a B on his Spanish test, and his teacher told him it would ruin his GPA and he'd never recover in time for college applications to any good school. He had a full-on anxiety attack!! EIGHT GRADE., I'm so sorry! I've watched "professionals" "testing" my daughter by over enunciated yelling. "DO. YOU. SEE. THE. APPLE? WHERE. IS. THE. RED. APPLE?" And my kids side eyeing me like "wtf?!" I have had to tell them, repeatedly, she can hear you! Stop yelling!!
Heck! I am all about signing, and more people should learn sign language!! About 60% of the time, my daughter with sound sensitivity, PREFERS signing. Her school is supposed to be able to jump into signing. But instead, I keep getting reports that she doesn't speak. And I reply, "did you try asking her in Sign?" 😲, Thank you!, You know... for the state test, our case worker asked "is there any chance she will not be willing to participate during the evaluation?" WHA.... *looks around like it may be a joke* Follow up question: "is there anything you can recommend that might help her be more comfortable during the evaluation?" (3hr one) I was agast!!! I said, "Yes. She thrives from a strict repetitive schedule. So we should meet weekly to get her used to you before the evaluation." *taps microphone* This is the test for AUTISM right?? Am I in the right room?, Right?!?! I'm like, she has excellent hearing!! Watch this! Barely a whisper, more a mouth movement: "do you want to go shopping?" She whispers back: "one toy?" Hearing test complete! 😁 (they still ended up torturing her), 🥰 thank you!, She's 3.5 and no... she has endured numerous hearing tests. Which no amount of bribery makes her want to keep doing those, even though ENT frequently requests.
When pediatrician, medical professionals, or whomever ask if she has had an eye exam, I tell them no. The follow-up question is always: "Do you suspect she has vision problems?" I have had her see something on my face from across the room, come over and remove an eyelash from my cheek or piece of skin off my face. Then she holds it up to show me.
I understand it's medically relevant, but come on, school nurse!! Was she even patient with my daughter or just in a hurry to wrap up her checklist? Now it's a whole big thing!, But it's a special needs school! I think it's unrealistic for a nurse employed at a special needs school to get frustrated (I spoke with her today) when the kids don't sit down and obey her commands., This sounds like it could be something called a “visual field” machine. If you call a private practice and ask, they can tell you who in the area may have one/who works well with autistic children., I say things along the line of this all the time!!! We are in the 21st Century for goodness sake. We ain’t training our children to work in factories like robots anymore!! I wish like the Scandinavian countries we do forest school and slowly introduce serious education later on. I’m so lucky the SEN unit my daughter is in is mostly child lead.
But hear all the time children struggling even with tutors and help from parents. A child should not be having a panic attack over a test :(., I wonder if you can ask to have it repeated but with your presence so that you can coach the nurse through the exam?, I think that's an excellent suggestion and will email her teacher! Thank you!
|
Make a wish
|
My son is autistic and loves F1 his dream is to go to an f1 race is there anything like make a wish in the uk for people with autism
|
Make a wish is usually for kids that are terminally ill and/or not likely to get better., Do you want to to go to an f1 race?, is there anything similar for people with autism, Not quite. Make a wish just requires the condition to be life threatening.
Autism definitely doesn’t qualify though., >to to go to an f1 rac
my son wants to but financially we cant afford it and I was wondering if there where any charities that would offer finical support to help him go to one
|
Mama Bear is coming out…
|
***Update:
I appreciate everyone’s honest replies. Basically, I went into the meeting and just listened to what she had to say. She came up with a success plan for him (what they know about him, target behaviors they’re working on with him, plans to reintegrate him, and of course what they’ll do if he engages in unsafe behavior [which isn’t immediately going to be deciding this may not be the best fit for him]).
To answer everyone’s questions, he goes to a public school. The after school program is a part of that public school.
Their solution was offering 1:1 support (the state occasionally releases grants that can be used to fund 1:1. From what I understand, the funds are granted to me, and we hire an outside agency (she gave us names/phone #s to do the legwork), and they provide the 1:1 support he needs. Has anyone heard of this? Have experience with this? Can help me understand this?
***End of update
So, I’ve been posting a lot on this page in the past couple of weeks because of my 5 year old son’s recent autism diagnosis. He was also diagnosed with adhd. Due to some aggressive behaviors at his after school program, we’re meeting with his pediatrician tomorrow to discuss getting him started on the medication initially recommended by the psychiatrist who diagnosed him.
His after school program told his father in not so many words that they feel their program might be too unstructured for him & that they can only have so much structure.
Sounds like the director of the after school program doesn’t know who she’s dealing with. If my son is going to start medication to cut the aggressive behaviors that you have an issue with, then you and your staff need to accommodate my son! I’m sorry if you’re understaffed or overworked or my son is just too much for you to deal with, but just because he needs some modifications, that doesn’t mean your program won’t work for him!
We’re meeting with the director tomorrow. I’m fuming. I’ve been very understanding up until this point, but I work a full-time job I can’t lose (as does my ex-husband), and we’re not losing our spot in your program because you can’t bend a little bit.
Need feedback guys. Thanks.
|
Many programs could not accommodate my autistic/ADHD child. I would be thrilled with their honesty. Placing my son in an after school program that cannot accommodate him wouldn’t be helpful for anyone., You are starting a long journey. You, your son, and your ex have much to learn about ASD. Being a calm, cool, and under control Mama Bear will serve you best. Good luck., Just like most daycares, after care isn’t required to do anything to accommodate kids. Sometimes you can get things to work out, but it will be a huge uphill battle at best., Deep breath.
I know this feels like a rejection, but maybe changing to a new program will turn out better in the end. Antagonizing the director might not help.
They have to retain their teachers, keep the other students safe, and do right by your son, too.
If this is a private aftercare program, you might not get a say if they allow him to stay, anyway. It’s a private business that can choose and refuse their students., I understand that you are upset, but they are telling you they can’t handle your child. Wouldn’t you rather them tell you then not and something happens., My son's first school experience was at a Reggio model school - completely unstructured. They just place out a bunch of activities and the kids can explore on their own. There is no schedule except for snacks. My son was SO stressed out there - his behavior was unmanageable by everyone, even myself! He was often totally alone because nobody was going to force anybody to interact or engage with other people/activities, so since he was nonverbal that meant he basically just sat on the swings alone the entire time. But he WANTED to join in with the other kids, but he couldn't talk and nobody knew how to include him well, so he was just alone all the time and so stressed and upset every day.
I moved him to a preschool that has a very set schedule, reward charts, etc and he has THRIVED there. Nobody plays alone - if my son doesn't like a particular activity like painting, he's allowed to play trains but he still has to sit at the craft table with everyone else. My son's behavior did a complete turnaround in the first few weeks, and by the end of about 6-8 weeks he was starting talk! I was completely mindblown.
I wish the first school would have just encouraged us to look elsewhere. They are founded on the Reggio model and I do think it would have been unfair to expect them to make accommodations for my son that would have been against their core teaching principles. Overall we wasted so much time and energy (and tears and frustration, truthfully) when there was a much better fitting option out there for us. I'm wondering if maybe that's true for you guys?, Most of these after school programs are run by 19yr olds. They definitely aren’t equipped to deal with aggressive behaviors. And honestly I think they have every right to deny any child that shows aggressive behavior, They’re not there for you to keep your job—they’re there to provide care for ALL the children in the program, and their staffing limitations are legitimate concerns for them (if that’s what is going on).
I wouldn’t advise walking into that meeting with the tone you wrote this post. It’s also hard to provide any kind of constructive feedback of what they’re saying is or isn’t unreasonable if you don’t provide specifics examples of what’s going on with your kid while at after care., You asked for feedback, so I'll be blunt. Get your (understandable) anger out of your system before you go to that meeting. If you walk in with the attitude that they don't know who they're dealing with it's going to get you and your son thrown right out for sure. Do you know why they're saying what they're saying? Saying the program is "too unstructured" is very vague. If I were you, I'd ask them what they mean by this and actually listen to what they say. It's possible there's an underlying safety issue for your son or the other children and you wouldn't want to force your son to be somewhere that they can't safely supervise him. Listening to their concerns and then bringing up the fact that he'll be starting medication could open the door for him to return in the future. Demanding that they keep him in the program despite their concerns will slam that door shut entirely. Also, keep in mind you are not entitled to this program (or any childcare program other than free public schooling) and if they feel they cannot safely accommodate your son, they can tell you that you need to find childcare elsewhere., Generally only public schools have a legal obligation to accommodate your child as you have a right to a free and appropriate education., I understand your frustration. I will tell you from my perspective I used to work at an after-school type program now. I am a Para for kids with autism and I have 2 children with ASD. While I worked at the after-school program, my youngest would come with me, and I decided as soon as I stopped working there that he would never attend again.
These programs are not equipped to deal with children with behaviors. The staff to child ratio is about 25 to 1. So, 1 "adult" to 25 kids. Most of the staff are around 18, so very little experience. They pay so low that they always have a high turnover of staff and new staff are barely trained. The only training the state requires is CPR. We would try to include and not discriminate when a kid joined, but every time, we had to tell the parents that it wasn't working. We did not have the staff if a kid eloped or dealing with violent behavior. We had to do what was best for the hundreds of other kids in our care. We were even told that we couldn't make a kid stay, so we had procedures to just call parents that their kid left the building and try to keep an eye on where they went.
For me, as a mother, I want my child to be safe, and I knew this environment was not safe for my child if he was not with me. My child has a violent tendency and is medicated, but the medication does not solve the problem. it just helps them. I do not want to be sued if my child attacks another child, and after-school program has no way to stop it. Also, my child could harm himself, and no one trained to stop him. Having a child with ASD is hard, and it is harder to find childcare. I would try to find something different that can suit your child's needs more., They are being honest with you about what they are able to provide. I've had plenty of places want to take my child in that I knew in fact did not have the experience. Be thankful they are being honest and not just leading you on to get a check.
Private schools and programs aren't under any obligation to accommodate or modify for your child.
So, I wouldn't go into this meeting guns blazing, because IMO you don't have much ground.
Ask them if they are willing to have a trial period. Discuss what your son may need and what accommodations they might be able to provide. This might buy you some time to look into other programs. Tell them about your son's medication, because once he starts that it may alleviate some of the behaviors that they are concerned about not being able to handle.
Take a deep breath and don't burn a bridge. I know it hurts, but they are being honest. Maybe they will try it out which gives you some time to make arrangements., I can definitely sympathize with your frustration, and I get it…. But no amount of pushing on your end will make a square peg fit into a round hole. If they can’t accommodate your son then you need to be mindful and get to finding a solution that will work for you. We waited 6 months for a spot to open up in the daycare in our town solely for socialization purposes. On day one when they complained about having a difficult time communicating with my son and basically invited me to pick him up even earlier so they basically didn’t have to deal with him during nap time I was fuming!!!! Every single red flag was raised, but I let my husband talk me into being more tempered and riding it out. It was an awful experience from start to finish. A facility not being equipped to handle your child can actually cause harm to your child that there isn’t a quick fix for. You’d be better served by approaching this situation looking for what’s in your son’s best interest— even if that doesn’t align with what’s seemingly necessary for your work schedules., I understand your feelings. My son got dropped from his daycare when he was three because they couldn’t handle him. It was a Montessori school and he needed more attention from the teachers to do the activities with the other kids. It hurt. I don’t know if your afterschool program is equipped to help your son the way he needs it and I know with those sorts of things (private business daycares) unless it’s something through the state, they probably don’t have to accommodate. You may need to look at a specialized program which may be more beneficial for your son anyway. The afterschool program may be able to help you transition into a different program and have recommendations. Just try to go into it as calmly and professionally as possible. They will definitely be more willing to help you then. I’m so sorry though. I understand the stress of needing to keep the fulltime jobs and now you’re having to handle this., My son’s first school/pre-k was not equipped to handle him and didn’t tell me, his teacher tried to suggest it and their SPED coordinator shut her down- I wish I had pulled my son out of the class then, we are still 2 years later working through aggression that was triggered by his first school experience. There’s a lot of good advice and perspective in this thread!, Yeah, that's something we need to distinguish here: OP, is this a private business or is it a program run by the public school?
If it's operated by the school, IDEA Part B addresses school recreational activities and all. They are required to make reasonable accommodations. That could include hiring extra staff for him.
But if this is a private business, unfortunately, you likely have 0 ground to work with.
If it's operated by your school, I would start with emailing the director of this program and your director of special Ed. Do talk to an advocate first for guidance.
|
Managing Dissappointment
|
I am having a hard time managing the grief and disappointment from the parenting experience I thought I would have versus the one I am having and I feel like a terrible selfish person for it. My son is 3, non verbal, and a sweet delight. He's a amazing. He's not a disappointment. But I haven't heard his sweet little voice, I've never heard him say mama, we can't talk about his favorite things. Of course, when I dreamed of being a mom I was looking forward to all these things. A close family member has a son a similar age so I get a front row seat to what I am "missing out on" I don't want my disappointment to keep me from enjoying patenting but I feel like it is right now.
Does anyone have advice on managing expectations and dealing with these challenging feelings? I really hope I am not the only one who has felt this way. Does it get better?
|
It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!, It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!, It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!, It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!, It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!, It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!, It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!, It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!, It’s hard not to compare for sure. It also could change. My son was pretty much non-verbal at 3 with only the very rare mimicked words he would drop out of nowhere. He’s 5 now and he talks all the time. There are still things he’s unable to do, conversationally, at the moment. I can’t really ask him about his day or ask him what he thinks about anything. But his speech is functional to the point where he can ask me for things, tell me what he wants, he can say “I love you daddy” now. All things I couldn’t imagine him doing when he was 3 and not speaking.
I had all these ideas in my head of what parenting was going to be like and for the most part it’s nothing like I anticipated. But I’ve learned to celebrate his successes, manage my expectations, and just let him be him. It’s likely never going to be like what I see from other parents and their kids. But I couldn’t imagine my life without him. He brings me so much happiness by just being him.
Things that helped me: I took a long break from social media. I couldn’t really take seeing my friends with their kids and what they were doing so I shrank my circle and tried to stay present in the moment. Seek out people who are going through something similar and make them part of your circle. My son has a friend at his ABA center and we are starting to become friends with his family so they can have play dates together. I opened up to people closest to me who were capable of empathy and didn’t try to downplay my struggles. It helped to get things off my chest. I have a friend who has a daughter on the spectrum. I have a friend who has a NT son but works with kids on the spectrum. They’ve been great and very understanding. Sometimes you need people to help prop you up., I do fairly well except when I witness kids younger than my boys doing the things that I imagined they would be able to do by now. It’s a slap in the face that we have a different life experience behind and ahead of us than most. One thing that I do enjoy, amongst most everything, is that I get to really enjoy the developmental process of both my boys and savor every success. I draw hope from knowing that I saw them do an activity for the first time yesterday or last week, and I can recall how far they have come, step by little step. I try not to compare them to other children or even each other in their development, it may be easier now since I have firsthand knowledge that identical twins develop in different stages., My only advice would be to keep reminding yourself that your sons childhood is only a very short time. It will disappear soon and so it is important to allow him to know he is loved, accepted and cherished exactly as he is.
Truly I feel your pain as my son didn't start speaking until he was 5. And now he smashes all of my expectations everyday, I truly believe that he came into his own once everyone accepted him and stopped "pushing" him to do what is expected.
Please give yourself so much grace and work on allowing you and your son to love your own story without worry about what might have been., The way i look at it... it's a different journey. you can't compare your kids or your experiences with others.
Is it hard. yes... but your son is 3, there's no limit on what he can achieve, celebrate the wins.
Speech therapy really helped my son, he was pretty much non verbal until he was 4, he started speech therapy when he was 5 and in the last 6 months, he's made so much progress, it's amazing.
Make sure he get as much support as possible and who knows what he can do., You're definitely not the only one who feels that way. It's really hard coming to terms with the fact that my kiddos are on their own timeline. And when I say that I dont mean that popcorn line that gets thrown around. It's gard seeing posts in their due date groups. My youngest is also 3 and pretty much non verbal. He is nowhere close to potty training, and seeing all the posts about how the other kids are using the potty is so disheartening. My oldest is at least advanced in reading so I have some idea what it's like to not always be behind.
It's hard not knowing if my youngest will ever talk, it's hard knowing my oldest is likely going to be left out at school. I worry constantly about what life will look like for them after Im gone. I just try to focus on the things they like and do what I can to make their lives as easy as possible. If I just frame it as they are exactly where THEY should be that helps a bit. But ultimately, I don't think this feeling ever truly goes away., It’s hard but gets better with time. I try to remind myself my parents didn’t choose “me” either. There’s a ton of things they wished, dreamed and hoped for that wasn’t me. Growing up I never understood why they couldn’t just accept me for me. I don’t want to do that to my son., In the same boat. My son is 5 and was diagnosed at 3. His speech has much improved and he can communicate his wants and needs but he has never said mama or I love you. We are still learning to manage disappointment and expectations. Just last week we applied for him to attend a school with an inclusion program and he was denied. All his friends are going there, 3 of which are also on the spectrum.
It does get better to a degree but I'm not sure it ever goes away. I try very hard to not compare him and be a supportive friend and family member but it is hard to celebrate other people milestones when you're still waiting for them.
My husband wants another kid and I fear that I have a NT child who feels neglected because my energy has to be with their brother or have another kiddo on the spectrum because where we live has limited services and it is already challenging. My husband and I are both professionals so the balancing act is difficult to say the least but we both have to work if we want to afford the special needs schools, therapies and such.
But we love him to the moon and back. We make a big deal out of milestones passed and anything he does. Right now we can't do all the things we thought we would be doing but we are alot further than we were before. So keep the faith and give yourself all the grace possible., I don't have advice because I experience similar feelings regularly. You are not alone., My son was 5 for first word and wasn’t potty trained until 7. He has profound intellectual disabilities. He is level 3 profound autism. He is now 38 years old and one of the most fascinating human beings I have ever met., I directed the guilt/disappointment energy into fighting for services/working with the kiddo. It worked well for us., Hi! Based on my experience your feelings are completely understandable. After our son was diagnosed at 2, I/we started all the therapies and adopted all the strategies and dug in deep. 2 years later and nothing seemed to be helping. I was in a deep grieving process then for probably the next 5 years as our son remained non-verbal, and continued to become more and more unmanageable. We had to move, change jobs, compromise on our daughter’s upbringing - it was terrible. Now he is about to turn 13 and there is still no bright light on the horizon. We haven’t been able to take a vacation in a decade. The rest of our lives will be spent compromising and worrying about what happens after we are gone. Hopefully your child is not so severe - many people on the less severe end of the spectrum learn to thrive, but on the extreme end there seem to be no solutions. The schools are just babysitting. If your child is mellow with no disruptive behaviors then count yourself lucky. Explore sign language and other forms of non-verbal communication. Good luck!, It is hard to not compare. I'm in the same boat. My son is 3, just turned 4 and is also very sweet, funny, creative, smart, inquisitive and I can go on and on... but I'm missing the same things you mentioned. I also have a front row seat to his cousin who is only 6 months older. Our grief doesn't mean we love less or wish for them to be different than who they are. We can grieve what we are missing out on while still loving and cherishing them. I understand 100%., This is in my situation. I don't know if it gets better, or changes because for me it's so hard everything I have to deal with with my son that I spend my time thinking about that to do about how he is than why he has ASD, In my family we had 5 babies born the same year, only months apart. Mine IS now four and still non-verbal. I do understand what you are feeling. I do have good days and very bad days. Comparing is not healthy but nearly imposible to avoid. Grief is not a lineal process, at least no for me. It's cicling and not always in order. I jump from anger to acceptance, to sadness...I get It. I LOVE my son but still cry for the one I imagined, the one who would tell me about his friends, about his pain, who would say "mommy" and would play with others and fight with others....I guess we can only learn to be happy our own way and celebrate our own small but very important victories. But that takes time and sometimes is normal to feel bad., I think that is normal to feel that way. My son is in his 30s and has improved a great deal since he was young. But he still can't support himself or live on his own. He is my only child so I never got to experience the typical experience most people do with their children. I also feel my son was cheated out of the life he should have had: going to college, driving, getting married, having kids, etc. I have felt so heartbroken over the years; when neighborhood kids wouldn't play with him, people staring with judgmental looks, not being able to find daycares that would take him, not being able to go places other families do, etc. He is a sweet young man and I love him with all my heart. It is just a different life to navigate. , There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, There’s a crappy analogy of “you planned a vacation to Italy, but instead you landed in Germany”…
I say visit your PCP and ask for meds. Fuel yourself and get rest every night, I also got off of social media. My son just barely turned 4 and is still nonverbal and he will not go into places like Target, indoor playgrounds, etc. He panics at the door or a few feet inside. And I can't ask him what about these places that frighten him so that I can try to help because he's nonverbal. I see enough of others in real life doing things with their kids that I may never get to do with my son, so I didn't need it all over my phone too., I feel that about every little step big time! NT kids, the development is basically automatic so IMO, the milestones are kind of whatever. Like I remember when my kiddo took his first step and it was fun but nothing much. Compared to after we learned about his autism, and his first “word” (sound) after years of trying… that was one of the happiest moments of my life, That part really is a treat, not taking anything for granted. Every little milestone my son reaches feels like the biggest thing in the world for our family., This really gives me hope, thank you!, I needed to hear this.... I'm not OP, but currently in the same position. Thank you for your response. 🧸, This is so helpful., love this., Thanks for sharing! What is life like with him now?, Not sure why this got down voted, it is a good way to direct my disappointment and worry and at least do what is in my control!, I'm so sorry this is your experience! As of right now it doesn't seem that that is the direction my son is headed in but hearing that it can remain so hard is part of my worry. I do hope things get better for your family., Thank you for understanding. My son has a cousin 6 months younger who is leaps and bounds ahead of him ., And it is a crappy analogy. This journey is more like planning a vacation to Italy and then being told, actually sorry we have no idea where you will land now but plan for it to take much longer than you anticipated. Oh and fasten those seatbelts, it will be a very bumpy ride., Very chill actually. He has mellowed quite a bit. Stimming is seldom and most all the rocking is gone. He sleeps extremely well now (may be due to seizure meds). His seizures started at age 30 but he only had three in early 2016 and medication controls them. He loves his music. Right now he’s a swifty. He loves car riding anywhere but especially to the grocery store. He also obsesses about beautiful glossy magazines.
He is a delight.❤️, Pretty much. Also, gym!
|
Marriage Woes
|
Hey friends,
After some advice from people who may “get it”. We have a fully ND household - all as yet undiagnosed but my son has a prelim ASD diagnosis and the rest of us hve all had in-depth discussions with the diagnostician who has confirmed it’s likely that all of us are some flavour of neurospicy. I mention this because I think it probably does have an impact in a number of ways.
This past year as we navigate these personal discoveries and struggles with our two eldest sons life has been exhausting. When we first had challenges with our eldest I went straight into doing fix it mode and then burned out hard. As my therapist says “anybody would have burned out in your position, your load is way way too much”.
Here’s the thing, my husband chose the middle of this emotional hellscape for me (PPD/PPA and autistic/adhd burnout) to start a new hobby that he has found completely all encompassing. He researches endlessly so he’s always on his phone, he’s on a discord for this hobby so always messaging people, he listens to YouTube videos when he commutes and then he’s gone and spent the majority of our savings on building a room specifically for this hobby. It took MONTHS. He is proper obsessed and I feel like I’ve lost my husband to this hobby. Not only that, I feel completely abandoned, unseen and unhelped with our insane lives. Anytime I ask him to stop and just parent he gets in a mood. Anytime I pull him away from his obsession he fully resents me. He doesn’t seem to want to engage with us.
Maybe someone else here has dealt with similar before…can anyone chime in with some insight into this behaviour? How do I not resent him for taking all our money, all our time and all my labour for granted and using it just for himself? I can absolutely get obsessive with new special interests too but I’m also not about to run off and spend everything on my obsessions and forsake my family. What can I do to help teach my likely autistic husband these boundaries?
|
[deleted], I wonder if there is any way you can have a conversation about trying to add some balance to things?
Set aside the times he can spend on his hobby and the times when he won’t work on it at all. As for the money aspect, you need to put some firm limits here, on what amount of money is available for him to spend on himself and what the family needs.
If you don’t make things black and white or seem like an attack, he may be more open to negotiation on this., My husband has a hobby. But it's at designated times and he is a present dad.
If talking to him doesn't work, marriage counseling can help..at the very least, you guys need to have a convo about finances. I have my "things" I love too, but I also have kids and can't blow our savings in this horrible economy on it. Right?, This was heartbreaking and so needed. I think you nailed it. I’m sitting here desperately trying to spin it nicely and treat it as just another hyperfixation but no, that’s not really true. He absolutely has chosen to check out. I miss him. He is better than this but at the moment, isn’t. Does that make sense? I know he’s struggling. I get it - I really do but you can’t just check out on your family :(, Right. It’s our entire savings. A lot of money. We’ve had all the discussions, it’s not getting anywhere. He’s not present a lot of the time. Think it’s time for counseling
|
Medicaid Spend Down
|
Does anyone have a high spend down for Medicaid? Has it been worth it to pay?
|
It is still cheaper than day care 🤷, It is still cheaper than day care 🤷, It is still cheaper than day care 🤷, It is still cheaper than day care 🤷
|
Medicaid for Autistic children?
|
Anyone know if Medicaid is given to children with Autism from all incomes? Or is there an income limit for this?
Is it better than private insurance? If yes, in what ways?
Thanks in advance for any help.
|
Definitely depends where you live. My husband makes too much for my son to qualify in California. However, the insurance through his work is far better here because the public services are way too far backup up to be seen within a year where we are even.
That said, My youngest brother is also diagnosed and on Medicaid. He lives in Washington state where I grew up and the program was a lot better there in my experience. They covered all his occupational and speech therapy growing up while my mother never had to pay a thing., Depends on your state. I’m in Missouri and I have to pay a spend down, basically a premium. Mine is $1000 a month, pretty much not worth it for me. But, if I reach over $1000 in bills in a month and I can submit the receipts for reimbursement., Varies state to state, as Medicaid is administered at the state level. We are working on getting qualified now. We definitely do not qualify with income. So if our son qualifies for the autism waiver, then we can get Medicaid too. I applied and got notice that we were on a waitlist, that there were only 150 spots for the state, and that we were number 186. The state just increased the number of spots and added 194 more. So now we’ve had to submit a Vineland and are waiting to hear back. If he qualifies for the autism waiver (I’m certain he will), then he will get Medicaid. I’m not sure for how long., I live in Oregon and my son qualifies for Medicaid through the K Plan. We are a high income family with assets, all of which are disregarded. We applied in August 2020 and within six months he’d been approved. AFAIK there is no waitlist. The eligibility gives him services through disability support services, most importantly a direct support professional (he currently gets 168 hours a month during the school year). It’s all been a huge lifesaver.
Medicaid is his secondary medical coverage. They pick up the deductibles and copays from my employers plan. This was most helpful when getting an AAC, which would have cost us over $4k due to my high deductible, high max OOP plan. We paid nothing for it and nothing for his Medicaid coverage., Depending on the state, you can get a Medicaid financial waiver and may qualify., I’m in PA and we qualify no matter what income is. It also covers everything private insurance would never even think about covering. I don’t even have private insurance for my daughter anymore because there just wasn’t a point after she qualified for MA, Georgia here and we also have the waiver (Katie Beckett) so my son has Medicaid as a secondary. It covers everything the primary insurance doesn’t PLUS it qualifies us for the HIPP program which reimburses all of our insurance premium payments for the whole family (~$500/month), Im in WA, we are above the income requirements for state medical, however we will pay $20 per kid(2kids) to keep the state medical. So here even if you make too much for kids being on medicaid, you can pay a fee to get or keep it. Still cheaper than other insurances and the hubs doesn't get medical from his work place, we couldn't afford it if he did anyways., Depending upon where you live they will wave your income. Unfortunately, most kids in NY get denied if they are under 7 though., Thanks everyone for your helpful responses!, California there is an income waiver for those with disabilities. Ask your regional center coordinator. In process of getting it for my daughter as secondary insurance. , WA State has a separate program through Developmental Disabilities Administration. It is not dependent on income, like straight Medicaid, but offers the same Medicaid benefits., Our regional center coordinator told us to apply for medical despite our income. Insurance covers OT and ST right now with a $10 copay per visit, Hi! I’m in PA too. I’m struggling to find out what services our state deals with. Can I ask what you’ve been able to get into? We so far have only gotten into special needs preschool through the public school district, Oh wow! Thank you so much for this! We tried when he was diagnosed but we couldn’t get anywhere with anyone, they all just said we made too much and we didn’t have the energy to keep pushing. Both the state and our health coordinator at Kaiser shut us down. Will try again and mention the waiver specifically!, This makes sense! My mother is very low income so we were all on medicaid growing up regardless. Once my brother was diagnosed his caseworker set all his disability and therapies up. But that was 8 years ago and his caseworkers were very aware my mother couldn’t have been bothered to herself which was probably why they helped as much as they did., Once you get MA then you can call whatever provider you choose and find out where to start with behavioral services, my daughter had a bht at daycare before starting ABA full time and that was covered, as well as everything the above poster listed. It’s a lot of phone work and paperwork but if you want any therapies for you kiddo it’s the way to get them and have them covered. Compass is the best place to start, you’ll need to upload the diagnosis paperwork etc, after that it’s a lot of phone calls but, anything such as ST, OT, PT, ABA and BHT services are covered as well as all regular healthcare costa, Google PA my compass, that will take you to the site where you can register and apply for MA. In my experience so far it has covered everything, all ABA therapy, regular Dr appointments, dentist. We were in the hospital for RSV and MA covered it, Feel free to DM me if you have any questions, it’s a long process if you’re trying to get ABA etc. but it’s worth it and I was shocked how much PA covers actually, Of course! Good luck! I’m learning with all of this they don’t make anything easy. Here’s some good info about it so you know what to ask for. :) https://rula.disabilityrightsca.org/rula-book/chapter-11-the-medi-cal-developmental-disability-waiver/11-1-what-is-the-dd-waiver/, It can be hard for even the most resourceful parents to navigate this complex system of additional benefits. That’s great that the caseworkers stepped up., I’d love to DM you in a bit after I drop my girl off the preschool. Thank you. I feel so lost lol, Definitely depends where you live. My husband makes too much for my son to qualify in California. However, the insurance through his work is far better here because the public services are way too far backup up to be seen within a year where we are even.
That said, My youngest brother is also diagnosed and on Medicaid. He lives in Washington state where I grew up and the program was a lot better there in my experience. They covered all his occupational and speech therapy growing up while my mother never had to pay a thing., Depends on your state. I’m in Missouri and I have to pay a spend down, basically a premium. Mine is $1000 a month, pretty much not worth it for me. But, if I reach over $1000 in bills in a month and I can submit the receipts for reimbursement., Varies state to state, as Medicaid is administered at the state level. We are working on getting qualified now. We definitely do not qualify with income. So if our son qualifies for the autism waiver, then we can get Medicaid too. I applied and got notice that we were on a waitlist, that there were only 150 spots for the state, and that we were number 186. The state just increased the number of spots and added 194 more. So now we’ve had to submit a Vineland and are waiting to hear back. If he qualifies for the autism waiver (I’m certain he will), then he will get Medicaid. I’m not sure for how long., I live in Oregon and my son qualifies for Medicaid through the K Plan. We are a high income family with assets, all of which are disregarded. We applied in August 2020 and within six months he’d been approved. AFAIK there is no waitlist. The eligibility gives him services through disability support services, most importantly a direct support professional (he currently gets 168 hours a month during the school year). It’s all been a huge lifesaver.
Medicaid is his secondary medical coverage. They pick up the deductibles and copays from my employers plan. This was most helpful when getting an AAC, which would have cost us over $4k due to my high deductible, high max OOP plan. We paid nothing for it and nothing for his Medicaid coverage., Depending on the state, you can get a Medicaid financial waiver and may qualify., I’m in PA and we qualify no matter what income is. It also covers everything private insurance would never even think about covering. I don’t even have private insurance for my daughter anymore because there just wasn’t a point after she qualified for MA, Georgia here and we also have the waiver (Katie Beckett) so my son has Medicaid as a secondary. It covers everything the primary insurance doesn’t PLUS it qualifies us for the HIPP program which reimburses all of our insurance premium payments for the whole family (~$500/month), Im in WA, we are above the income requirements for state medical, however we will pay $20 per kid(2kids) to keep the state medical. So here even if you make too much for kids being on medicaid, you can pay a fee to get or keep it. Still cheaper than other insurances and the hubs doesn't get medical from his work place, we couldn't afford it if he did anyways., Depending upon where you live they will wave your income. Unfortunately, most kids in NY get denied if they are under 7 though., Thanks everyone for your helpful responses!, California there is an income waiver for those with disabilities. Ask your regional center coordinator. In process of getting it for my daughter as secondary insurance. , WA State has a separate program through Developmental Disabilities Administration. It is not dependent on income, like straight Medicaid, but offers the same Medicaid benefits., Our regional center coordinator told us to apply for medical despite our income. Insurance covers OT and ST right now with a $10 copay per visit, Hi! I’m in PA too. I’m struggling to find out what services our state deals with. Can I ask what you’ve been able to get into? We so far have only gotten into special needs preschool through the public school district, Oh wow! Thank you so much for this! We tried when he was diagnosed but we couldn’t get anywhere with anyone, they all just said we made too much and we didn’t have the energy to keep pushing. Both the state and our health coordinator at Kaiser shut us down. Will try again and mention the waiver specifically!, This makes sense! My mother is very low income so we were all on medicaid growing up regardless. Once my brother was diagnosed his caseworker set all his disability and therapies up. But that was 8 years ago and his caseworkers were very aware my mother couldn’t have been bothered to herself which was probably why they helped as much as they did., Once you get MA then you can call whatever provider you choose and find out where to start with behavioral services, my daughter had a bht at daycare before starting ABA full time and that was covered, as well as everything the above poster listed. It’s a lot of phone work and paperwork but if you want any therapies for you kiddo it’s the way to get them and have them covered. Compass is the best place to start, you’ll need to upload the diagnosis paperwork etc, after that it’s a lot of phone calls but, anything such as ST, OT, PT, ABA and BHT services are covered as well as all regular healthcare costa, Google PA my compass, that will take you to the site where you can register and apply for MA. In my experience so far it has covered everything, all ABA therapy, regular Dr appointments, dentist. We were in the hospital for RSV and MA covered it, Feel free to DM me if you have any questions, it’s a long process if you’re trying to get ABA etc. but it’s worth it and I was shocked how much PA covers actually, Of course! Good luck! I’m learning with all of this they don’t make anything easy. Here’s some good info about it so you know what to ask for. :) https://rula.disabilityrightsca.org/rula-book/chapter-11-the-medi-cal-developmental-disability-waiver/11-1-what-is-the-dd-waiver/, It can be hard for even the most resourceful parents to navigate this complex system of additional benefits. That’s great that the caseworkers stepped up., I’d love to DM you in a bit after I drop my girl off the preschool. Thank you. I feel so lost lol, Definitely depends where you live. My husband makes too much for my son to qualify in California. However, the insurance through his work is far better here because the public services are way too far backup up to be seen within a year where we are even.
That said, My youngest brother is also diagnosed and on Medicaid. He lives in Washington state where I grew up and the program was a lot better there in my experience. They covered all his occupational and speech therapy growing up while my mother never had to pay a thing., Depends on your state. I’m in Missouri and I have to pay a spend down, basically a premium. Mine is $1000 a month, pretty much not worth it for me. But, if I reach over $1000 in bills in a month and I can submit the receipts for reimbursement., Varies state to state, as Medicaid is administered at the state level. We are working on getting qualified now. We definitely do not qualify with income. So if our son qualifies for the autism waiver, then we can get Medicaid too. I applied and got notice that we were on a waitlist, that there were only 150 spots for the state, and that we were number 186. The state just increased the number of spots and added 194 more. So now we’ve had to submit a Vineland and are waiting to hear back. If he qualifies for the autism waiver (I’m certain he will), then he will get Medicaid. I’m not sure for how long., I live in Oregon and my son qualifies for Medicaid through the K Plan. We are a high income family with assets, all of which are disregarded. We applied in August 2020 and within six months he’d been approved. AFAIK there is no waitlist. The eligibility gives him services through disability support services, most importantly a direct support professional (he currently gets 168 hours a month during the school year). It’s all been a huge lifesaver.
Medicaid is his secondary medical coverage. They pick up the deductibles and copays from my employers plan. This was most helpful when getting an AAC, which would have cost us over $4k due to my high deductible, high max OOP plan. We paid nothing for it and nothing for his Medicaid coverage., Depending on the state, you can get a Medicaid financial waiver and may qualify., I’m in PA and we qualify no matter what income is. It also covers everything private insurance would never even think about covering. I don’t even have private insurance for my daughter anymore because there just wasn’t a point after she qualified for MA, Georgia here and we also have the waiver (Katie Beckett) so my son has Medicaid as a secondary. It covers everything the primary insurance doesn’t PLUS it qualifies us for the HIPP program which reimburses all of our insurance premium payments for the whole family (~$500/month), Im in WA, we are above the income requirements for state medical, however we will pay $20 per kid(2kids) to keep the state medical. So here even if you make too much for kids being on medicaid, you can pay a fee to get or keep it. Still cheaper than other insurances and the hubs doesn't get medical from his work place, we couldn't afford it if he did anyways., Depending upon where you live they will wave your income. Unfortunately, most kids in NY get denied if they are under 7 though., Thanks everyone for your helpful responses!, California there is an income waiver for those with disabilities. Ask your regional center coordinator. In process of getting it for my daughter as secondary insurance. , WA State has a separate program through Developmental Disabilities Administration. It is not dependent on income, like straight Medicaid, but offers the same Medicaid benefits., Our regional center coordinator told us to apply for medical despite our income. Insurance covers OT and ST right now with a $10 copay per visit, Hi! I’m in PA too. I’m struggling to find out what services our state deals with. Can I ask what you’ve been able to get into? We so far have only gotten into special needs preschool through the public school district, Oh wow! Thank you so much for this! We tried when he was diagnosed but we couldn’t get anywhere with anyone, they all just said we made too much and we didn’t have the energy to keep pushing. Both the state and our health coordinator at Kaiser shut us down. Will try again and mention the waiver specifically!, This makes sense! My mother is very low income so we were all on medicaid growing up regardless. Once my brother was diagnosed his caseworker set all his disability and therapies up. But that was 8 years ago and his caseworkers were very aware my mother couldn’t have been bothered to herself which was probably why they helped as much as they did., Once you get MA then you can call whatever provider you choose and find out where to start with behavioral services, my daughter had a bht at daycare before starting ABA full time and that was covered, as well as everything the above poster listed. It’s a lot of phone work and paperwork but if you want any therapies for you kiddo it’s the way to get them and have them covered. Compass is the best place to start, you’ll need to upload the diagnosis paperwork etc, after that it’s a lot of phone calls but, anything such as ST, OT, PT, ABA and BHT services are covered as well as all regular healthcare costa, Google PA my compass, that will take you to the site where you can register and apply for MA. In my experience so far it has covered everything, all ABA therapy, regular Dr appointments, dentist. We were in the hospital for RSV and MA covered it, Feel free to DM me if you have any questions, it’s a long process if you’re trying to get ABA etc. but it’s worth it and I was shocked how much PA covers actually, Of course! Good luck! I’m learning with all of this they don’t make anything easy. Here’s some good info about it so you know what to ask for. :) https://rula.disabilityrightsca.org/rula-book/chapter-11-the-medi-cal-developmental-disability-waiver/11-1-what-is-the-dd-waiver/, It can be hard for even the most resourceful parents to navigate this complex system of additional benefits. That’s great that the caseworkers stepped up., I’d love to DM you in a bit after I drop my girl off the preschool. Thank you. I feel so lost lol, Definitely depends where you live. My husband makes too much for my son to qualify in California. However, the insurance through his work is far better here because the public services are way too far backup up to be seen within a year where we are even.
That said, My youngest brother is also diagnosed and on Medicaid. He lives in Washington state where I grew up and the program was a lot better there in my experience. They covered all his occupational and speech therapy growing up while my mother never had to pay a thing., Depends on your state. I’m in Missouri and I have to pay a spend down, basically a premium. Mine is $1000 a month, pretty much not worth it for me. But, if I reach over $1000 in bills in a month and I can submit the receipts for reimbursement., Varies state to state, as Medicaid is administered at the state level. We are working on getting qualified now. We definitely do not qualify with income. So if our son qualifies for the autism waiver, then we can get Medicaid too. I applied and got notice that we were on a waitlist, that there were only 150 spots for the state, and that we were number 186. The state just increased the number of spots and added 194 more. So now we’ve had to submit a Vineland and are waiting to hear back. If he qualifies for the autism waiver (I’m certain he will), then he will get Medicaid. I’m not sure for how long., I live in Oregon and my son qualifies for Medicaid through the K Plan. We are a high income family with assets, all of which are disregarded. We applied in August 2020 and within six months he’d been approved. AFAIK there is no waitlist. The eligibility gives him services through disability support services, most importantly a direct support professional (he currently gets 168 hours a month during the school year). It’s all been a huge lifesaver.
Medicaid is his secondary medical coverage. They pick up the deductibles and copays from my employers plan. This was most helpful when getting an AAC, which would have cost us over $4k due to my high deductible, high max OOP plan. We paid nothing for it and nothing for his Medicaid coverage., Depending on the state, you can get a Medicaid financial waiver and may qualify., I’m in PA and we qualify no matter what income is. It also covers everything private insurance would never even think about covering. I don’t even have private insurance for my daughter anymore because there just wasn’t a point after she qualified for MA, Georgia here and we also have the waiver (Katie Beckett) so my son has Medicaid as a secondary. It covers everything the primary insurance doesn’t PLUS it qualifies us for the HIPP program which reimburses all of our insurance premium payments for the whole family (~$500/month), Im in WA, we are above the income requirements for state medical, however we will pay $20 per kid(2kids) to keep the state medical. So here even if you make too much for kids being on medicaid, you can pay a fee to get or keep it. Still cheaper than other insurances and the hubs doesn't get medical from his work place, we couldn't afford it if he did anyways., Depending upon where you live they will wave your income. Unfortunately, most kids in NY get denied if they are under 7 though., Thanks everyone for your helpful responses!, California there is an income waiver for those with disabilities. Ask your regional center coordinator. In process of getting it for my daughter as secondary insurance. , WA State has a separate program through Developmental Disabilities Administration. It is not dependent on income, like straight Medicaid, but offers the same Medicaid benefits., Our regional center coordinator told us to apply for medical despite our income. Insurance covers OT and ST right now with a $10 copay per visit, Hi! I’m in PA too. I’m struggling to find out what services our state deals with. Can I ask what you’ve been able to get into? We so far have only gotten into special needs preschool through the public school district, Oh wow! Thank you so much for this! We tried when he was diagnosed but we couldn’t get anywhere with anyone, they all just said we made too much and we didn’t have the energy to keep pushing. Both the state and our health coordinator at Kaiser shut us down. Will try again and mention the waiver specifically!, This makes sense! My mother is very low income so we were all on medicaid growing up regardless. Once my brother was diagnosed his caseworker set all his disability and therapies up. But that was 8 years ago and his caseworkers were very aware my mother couldn’t have been bothered to herself which was probably why they helped as much as they did., Once you get MA then you can call whatever provider you choose and find out where to start with behavioral services, my daughter had a bht at daycare before starting ABA full time and that was covered, as well as everything the above poster listed. It’s a lot of phone work and paperwork but if you want any therapies for you kiddo it’s the way to get them and have them covered. Compass is the best place to start, you’ll need to upload the diagnosis paperwork etc, after that it’s a lot of phone calls but, anything such as ST, OT, PT, ABA and BHT services are covered as well as all regular healthcare costa, Google PA my compass, that will take you to the site where you can register and apply for MA. In my experience so far it has covered everything, all ABA therapy, regular Dr appointments, dentist. We were in the hospital for RSV and MA covered it, Feel free to DM me if you have any questions, it’s a long process if you’re trying to get ABA etc. but it’s worth it and I was shocked how much PA covers actually, Of course! Good luck! I’m learning with all of this they don’t make anything easy. Here’s some good info about it so you know what to ask for. :) https://rula.disabilityrightsca.org/rula-book/chapter-11-the-medi-cal-developmental-disability-waiver/11-1-what-is-the-dd-waiver/, It can be hard for even the most resourceful parents to navigate this complex system of additional benefits. That’s great that the caseworkers stepped up., I’d love to DM you in a bit after I drop my girl off the preschool. Thank you. I feel so lost lol
|
Melatonin = worse sleep?
|
My 4 year old non verbal son with pretty severe ASD has been on Slenyto (Melatonin) for a short while in the past, I took him off of it when it seemed like his sleeping patterns were good and it went well for over a year.
In the past year, his sleeping schedule started falling into a weird pattern, he would go to sleep later and later over the months until it reached an 11:30pm limit that I thought was a little extreme for a child this young (we wake up at 7:30 am) and I went to the doc to get him back on melatonin.
It works, I give him his pill at 9:00 and he's asleep by 9:30 but since we started (going on 2 weeks), he hasn't slept through the night once, which is not normal for him. He wakes up at around 2 and goes back to sleep at around 5 or 6 to finally wake up for school at 7:30, it can't be healthy.
Has anyone experienced this with melatonin? Is it an adjustment phase, should I take him off it before the lack of sleep affects his health? Any advice welcome 🤗
|
Not particularly helpful, but my son goes through stages where he just doesn't sleep no matter what we do. Thankfully, they pass after a few weeks.
He does take 2mg melatonin nightly, and I give him magnesium occasionally, because it *might* not help, but it can't hurt., Try switching to magnesium citrate gummies instead and keep the melatonin to only once or twice a week.
Buy the low dose magnesium citrate that is marketed for mental benefits and not for laxative effects., IDK if this is helpful but my personal experience as an adult using melatonin is that over a certain amount it doesn't make me feel drowsy anymore. For me anything over 5mg is a waste and 10mg is too much., Might be worth trying switching to extended release melatonin, moving bedtime a little later, and giving a big meal or snack beforehand. Those 3 things helped my daughter., We noticed that our son (AuDHD) had really disregulated days following Melatonin use, and completely stopped. But when he was prescribed clonidine for the ADHD symptoms, he was able to sleep a lot better at night., It can help to pair the melatonin with a magnesium supplement. A lot of over the counter melatonin here in the us will include magnesium and also sometimes tryptophan saying they are the ingredients that help you stay asleep longer after melatonin helps you fall asleep. Magnesium is something many people are deficient in. Especially most American children or any people who eat a restrictive diet. We have used a powder magnesium supplement (Calm) that makes a fizzy raspberry lemonade and they drink that and take their 1 mg magnesium gummy. It works wonders., I believe that people build tolerance to melatonin so less is more. We’ve been using 0.25-0.5 mg (OTC liquid dropper) 2-3x a week as needed with some success. My daughter isn’t exactly sleeping like a rock, but some nights she sleeps through the whole night. It was working wonders and her sleep schedule was perfect before daylight savings. After day light savings, it was a disaster but she’s mostly okay again., my understanding is that melatonin is good for going to sleep only, not staying asleep. Our son used to get up in the middle of the night for various amounts of time. Some nights were better than others but it hasnt happened for months. "knock on wood"
We only use melatonin on an as needed basis. Its a hormone so its use can impair the bodies ability to naturally produce it so daily use for a longer period of time can cause issues for some.
​
For us, we had to basically told our son he had to go back to bed which he didnt like but it eventually he would slow down and go back to bed and little by little the pattern improved. But if we just let him stay up and do what he wanted he would party all night and fall asleep at aba therapy., We found that our son was consistently waking up when the melatonin wore off. We stopped using it at bedtime, and instead used it as needed if he woke up during the night, to put him back to sleep. Then it would wear off again around early morning and we would start the day., My son is KNOCKED OUT by tiny doses of melatonin but wakes up a few hours later and can't go back to sleep., We had the same problem with melatonin. Our son would fall asleep easy but would normally be wide awake a few hours later. It was awful. His doctor put him on clonidine, and that was a complete game changer. Might be something to look into to help., My son is like this as well (3 y/o) we just went through a few weeks of wake ups for no reason and then eventually it just fixed itself. He’s done it quite a few times and he has been on melatonin the whole time, That's actually something I didn't know. Back during his first run of melatonin he was on 2mg and this doctor bumped it up to 5mg, it might be the dosage... Thank you so much!, Thanks! I just checked and Slenyto is extended release melatonin. The meal could work, that's how I got him to start sleeping through the night when he was a baby. But where we live, it's already customary to eat a big dinner pretty late at 8pm (I know it's not the same in every culture). I'll try to snack it up though, it might actually work!, Not particularly helpful, but my son goes through stages where he just doesn't sleep no matter what we do. Thankfully, they pass after a few weeks.
He does take 2mg melatonin nightly, and I give him magnesium occasionally, because it *might* not help, but it can't hurt., Try switching to magnesium citrate gummies instead and keep the melatonin to only once or twice a week.
Buy the low dose magnesium citrate that is marketed for mental benefits and not for laxative effects., IDK if this is helpful but my personal experience as an adult using melatonin is that over a certain amount it doesn't make me feel drowsy anymore. For me anything over 5mg is a waste and 10mg is too much., Might be worth trying switching to extended release melatonin, moving bedtime a little later, and giving a big meal or snack beforehand. Those 3 things helped my daughter., We noticed that our son (AuDHD) had really disregulated days following Melatonin use, and completely stopped. But when he was prescribed clonidine for the ADHD symptoms, he was able to sleep a lot better at night., It can help to pair the melatonin with a magnesium supplement. A lot of over the counter melatonin here in the us will include magnesium and also sometimes tryptophan saying they are the ingredients that help you stay asleep longer after melatonin helps you fall asleep. Magnesium is something many people are deficient in. Especially most American children or any people who eat a restrictive diet. We have used a powder magnesium supplement (Calm) that makes a fizzy raspberry lemonade and they drink that and take their 1 mg magnesium gummy. It works wonders., I believe that people build tolerance to melatonin so less is more. We’ve been using 0.25-0.5 mg (OTC liquid dropper) 2-3x a week as needed with some success. My daughter isn’t exactly sleeping like a rock, but some nights she sleeps through the whole night. It was working wonders and her sleep schedule was perfect before daylight savings. After day light savings, it was a disaster but she’s mostly okay again., my understanding is that melatonin is good for going to sleep only, not staying asleep. Our son used to get up in the middle of the night for various amounts of time. Some nights were better than others but it hasnt happened for months. "knock on wood"
We only use melatonin on an as needed basis. Its a hormone so its use can impair the bodies ability to naturally produce it so daily use for a longer period of time can cause issues for some.
​
For us, we had to basically told our son he had to go back to bed which he didnt like but it eventually he would slow down and go back to bed and little by little the pattern improved. But if we just let him stay up and do what he wanted he would party all night and fall asleep at aba therapy., We found that our son was consistently waking up when the melatonin wore off. We stopped using it at bedtime, and instead used it as needed if he woke up during the night, to put him back to sleep. Then it would wear off again around early morning and we would start the day., My son is KNOCKED OUT by tiny doses of melatonin but wakes up a few hours later and can't go back to sleep., We had the same problem with melatonin. Our son would fall asleep easy but would normally be wide awake a few hours later. It was awful. His doctor put him on clonidine, and that was a complete game changer. Might be something to look into to help., My son is like this as well (3 y/o) we just went through a few weeks of wake ups for no reason and then eventually it just fixed itself. He’s done it quite a few times and he has been on melatonin the whole time, That's actually something I didn't know. Back during his first run of melatonin he was on 2mg and this doctor bumped it up to 5mg, it might be the dosage... Thank you so much!, Thanks! I just checked and Slenyto is extended release melatonin. The meal could work, that's how I got him to start sleeping through the night when he was a baby. But where we live, it's already customary to eat a big dinner pretty late at 8pm (I know it's not the same in every culture). I'll try to snack it up though, it might actually work!, Not particularly helpful, but my son goes through stages where he just doesn't sleep no matter what we do. Thankfully, they pass after a few weeks.
He does take 2mg melatonin nightly, and I give him magnesium occasionally, because it *might* not help, but it can't hurt., Try switching to magnesium citrate gummies instead and keep the melatonin to only once or twice a week.
Buy the low dose magnesium citrate that is marketed for mental benefits and not for laxative effects., IDK if this is helpful but my personal experience as an adult using melatonin is that over a certain amount it doesn't make me feel drowsy anymore. For me anything over 5mg is a waste and 10mg is too much., Might be worth trying switching to extended release melatonin, moving bedtime a little later, and giving a big meal or snack beforehand. Those 3 things helped my daughter., We noticed that our son (AuDHD) had really disregulated days following Melatonin use, and completely stopped. But when he was prescribed clonidine for the ADHD symptoms, he was able to sleep a lot better at night., It can help to pair the melatonin with a magnesium supplement. A lot of over the counter melatonin here in the us will include magnesium and also sometimes tryptophan saying they are the ingredients that help you stay asleep longer after melatonin helps you fall asleep. Magnesium is something many people are deficient in. Especially most American children or any people who eat a restrictive diet. We have used a powder magnesium supplement (Calm) that makes a fizzy raspberry lemonade and they drink that and take their 1 mg magnesium gummy. It works wonders., I believe that people build tolerance to melatonin so less is more. We’ve been using 0.25-0.5 mg (OTC liquid dropper) 2-3x a week as needed with some success. My daughter isn’t exactly sleeping like a rock, but some nights she sleeps through the whole night. It was working wonders and her sleep schedule was perfect before daylight savings. After day light savings, it was a disaster but she’s mostly okay again., my understanding is that melatonin is good for going to sleep only, not staying asleep. Our son used to get up in the middle of the night for various amounts of time. Some nights were better than others but it hasnt happened for months. "knock on wood"
We only use melatonin on an as needed basis. Its a hormone so its use can impair the bodies ability to naturally produce it so daily use for a longer period of time can cause issues for some.
​
For us, we had to basically told our son he had to go back to bed which he didnt like but it eventually he would slow down and go back to bed and little by little the pattern improved. But if we just let him stay up and do what he wanted he would party all night and fall asleep at aba therapy., We found that our son was consistently waking up when the melatonin wore off. We stopped using it at bedtime, and instead used it as needed if he woke up during the night, to put him back to sleep. Then it would wear off again around early morning and we would start the day., My son is KNOCKED OUT by tiny doses of melatonin but wakes up a few hours later and can't go back to sleep., We had the same problem with melatonin. Our son would fall asleep easy but would normally be wide awake a few hours later. It was awful. His doctor put him on clonidine, and that was a complete game changer. Might be something to look into to help., My son is like this as well (3 y/o) we just went through a few weeks of wake ups for no reason and then eventually it just fixed itself. He’s done it quite a few times and he has been on melatonin the whole time, That's actually something I didn't know. Back during his first run of melatonin he was on 2mg and this doctor bumped it up to 5mg, it might be the dosage... Thank you so much!, Thanks! I just checked and Slenyto is extended release melatonin. The meal could work, that's how I got him to start sleeping through the night when he was a baby. But where we live, it's already customary to eat a big dinner pretty late at 8pm (I know it's not the same in every culture). I'll try to snack it up though, it might actually work!, Not particularly helpful, but my son goes through stages where he just doesn't sleep no matter what we do. Thankfully, they pass after a few weeks.
He does take 2mg melatonin nightly, and I give him magnesium occasionally, because it *might* not help, but it can't hurt., Try switching to magnesium citrate gummies instead and keep the melatonin to only once or twice a week.
Buy the low dose magnesium citrate that is marketed for mental benefits and not for laxative effects., IDK if this is helpful but my personal experience as an adult using melatonin is that over a certain amount it doesn't make me feel drowsy anymore. For me anything over 5mg is a waste and 10mg is too much., Might be worth trying switching to extended release melatonin, moving bedtime a little later, and giving a big meal or snack beforehand. Those 3 things helped my daughter., We noticed that our son (AuDHD) had really disregulated days following Melatonin use, and completely stopped. But when he was prescribed clonidine for the ADHD symptoms, he was able to sleep a lot better at night., It can help to pair the melatonin with a magnesium supplement. A lot of over the counter melatonin here in the us will include magnesium and also sometimes tryptophan saying they are the ingredients that help you stay asleep longer after melatonin helps you fall asleep. Magnesium is something many people are deficient in. Especially most American children or any people who eat a restrictive diet. We have used a powder magnesium supplement (Calm) that makes a fizzy raspberry lemonade and they drink that and take their 1 mg magnesium gummy. It works wonders., I believe that people build tolerance to melatonin so less is more. We’ve been using 0.25-0.5 mg (OTC liquid dropper) 2-3x a week as needed with some success. My daughter isn’t exactly sleeping like a rock, but some nights she sleeps through the whole night. It was working wonders and her sleep schedule was perfect before daylight savings. After day light savings, it was a disaster but she’s mostly okay again., my understanding is that melatonin is good for going to sleep only, not staying asleep. Our son used to get up in the middle of the night for various amounts of time. Some nights were better than others but it hasnt happened for months. "knock on wood"
We only use melatonin on an as needed basis. Its a hormone so its use can impair the bodies ability to naturally produce it so daily use for a longer period of time can cause issues for some.
​
For us, we had to basically told our son he had to go back to bed which he didnt like but it eventually he would slow down and go back to bed and little by little the pattern improved. But if we just let him stay up and do what he wanted he would party all night and fall asleep at aba therapy., We found that our son was consistently waking up when the melatonin wore off. We stopped using it at bedtime, and instead used it as needed if he woke up during the night, to put him back to sleep. Then it would wear off again around early morning and we would start the day., My son is KNOCKED OUT by tiny doses of melatonin but wakes up a few hours later and can't go back to sleep., We had the same problem with melatonin. Our son would fall asleep easy but would normally be wide awake a few hours later. It was awful. His doctor put him on clonidine, and that was a complete game changer. Might be something to look into to help., My son is like this as well (3 y/o) we just went through a few weeks of wake ups for no reason and then eventually it just fixed itself. He’s done it quite a few times and he has been on melatonin the whole time, That's actually something I didn't know. Back during his first run of melatonin he was on 2mg and this doctor bumped it up to 5mg, it might be the dosage... Thank you so much!, Thanks! I just checked and Slenyto is extended release melatonin. The meal could work, that's how I got him to start sleeping through the night when he was a baby. But where we live, it's already customary to eat a big dinner pretty late at 8pm (I know it's not the same in every culture). I'll try to snack it up though, it might actually work!
|
Melatonin and ASD?
|
I was giving my son (4yrs old) 2mg of melatonin. It seemed to initiate sleep but he would almost always wake up in the middle of the night when I gave him melatonin. I told his developmental ped about this and she said he should be taking 5mg-6??
Has anyone had success with melatonin?
My son takes up to 2 hrs to fall asleep without it and fusses and whines. This is also with no naps in the day.
|
My daughter has same issue . I used weighted blanket which made a little difference. But then I started using magnesium, as I got to know that it help staying asleep . I checked with my nutritionist before giving magnesium as it has an upper dose and you don’t want to give more . PLEASE check with your doctor/ nutritionist before giving magnesium and see if it works. She still have days when she wakes up in the middle of the night ( and super fresh ) but all these things and then a routine has made it much better than before.
Good luck ., Also check with doctor about magnesium as well!, We had a similar experience with our son (21 yr old) since when he was 15. Doctor said that we can give up to 10 mg but even after that it didn't help so. The best thing that works for us is if the entire family goes to bed at about 11-11:30 pm after giving him a shower and making the room pitch dark. That definitely helped., I give my 5 yo 2.5-3mg and it works perfectly. However, he is very light for his age., I will look into magnesium thank you, My son is too, he is 35lbs so I though 5-6 mg was a lot :( 2 mg help him sleep but it’s almost guaranteed he will wake up at night, My daughter has same issue . I used weighted blanket which made a little difference. But then I started using magnesium, as I got to know that it help staying asleep . I checked with my nutritionist before giving magnesium as it has an upper dose and you don’t want to give more . PLEASE check with your doctor/ nutritionist before giving magnesium and see if it works. She still have days when she wakes up in the middle of the night ( and super fresh ) but all these things and then a routine has made it much better than before.
Good luck ., Also check with doctor about magnesium as well!, We had a similar experience with our son (21 yr old) since when he was 15. Doctor said that we can give up to 10 mg but even after that it didn't help so. The best thing that works for us is if the entire family goes to bed at about 11-11:30 pm after giving him a shower and making the room pitch dark. That definitely helped., I give my 5 yo 2.5-3mg and it works perfectly. However, he is very light for his age., I will look into magnesium thank you, My son is too, he is 35lbs so I though 5-6 mg was a lot :( 2 mg help him sleep but it’s almost guaranteed he will wake up at night, My daughter has same issue . I used weighted blanket which made a little difference. But then I started using magnesium, as I got to know that it help staying asleep . I checked with my nutritionist before giving magnesium as it has an upper dose and you don’t want to give more . PLEASE check with your doctor/ nutritionist before giving magnesium and see if it works. She still have days when she wakes up in the middle of the night ( and super fresh ) but all these things and then a routine has made it much better than before.
Good luck ., Also check with doctor about magnesium as well!, We had a similar experience with our son (21 yr old) since when he was 15. Doctor said that we can give up to 10 mg but even after that it didn't help so. The best thing that works for us is if the entire family goes to bed at about 11-11:30 pm after giving him a shower and making the room pitch dark. That definitely helped., I give my 5 yo 2.5-3mg and it works perfectly. However, he is very light for his age., I will look into magnesium thank you, My son is too, he is 35lbs so I though 5-6 mg was a lot :( 2 mg help him sleep but it’s almost guaranteed he will wake up at night, My daughter has same issue . I used weighted blanket which made a little difference. But then I started using magnesium, as I got to know that it help staying asleep . I checked with my nutritionist before giving magnesium as it has an upper dose and you don’t want to give more . PLEASE check with your doctor/ nutritionist before giving magnesium and see if it works. She still have days when she wakes up in the middle of the night ( and super fresh ) but all these things and then a routine has made it much better than before.
Good luck ., Also check with doctor about magnesium as well!, We had a similar experience with our son (21 yr old) since when he was 15. Doctor said that we can give up to 10 mg but even after that it didn't help so. The best thing that works for us is if the entire family goes to bed at about 11-11:30 pm after giving him a shower and making the room pitch dark. That definitely helped., I give my 5 yo 2.5-3mg and it works perfectly. However, he is very light for his age., I will look into magnesium thank you, My son is too, he is 35lbs so I though 5-6 mg was a lot :( 2 mg help him sleep but it’s almost guaranteed he will wake up at night
|
Subsets and Splits
No community queries yet
The top public SQL queries from the community will appear here once available.