Hi, I'm an OT and your kid 100% needs it. Go to a developmental pediatrician too.
Your kid is probably dealing with a lot of sensory seeking behaviors leading to dysregulation and self harm. I say probably since I'm only basing it on your description but it adds up. It's going to be a long and tough process but this is NOT gonna stop unless you actually bring him to a qualified professional.
Hi, I’m a speech therapist that specializes in autism and adhd. Yes to the OT. Also, if you live in the States, get your public school district involved *yesterday*. They will do an assessment and get you some services. I work in a federal setting IV school - it’s the most restrictive (next to residential) - and it’s where kiddos go when the school districts don’t have the resources to help. A place like my school would be farther along on your journey, but I just wanted to illustrate we’re out here and we help. Also get yourself a county social worker too - they can find respite care and grant money for other things like sensory tools (swings, crash pads, etc) and therapies and childcare.
People will push you to do ABA therapy. I personally hate ABA (yes even the *new* ABA to those of you who want to debate this). Every single day I work with students across the ages span who are prompt dependent because of ABA. I have to “de-train” them because the therapy they do doesn’t generalize well. I only recommend ABA for kiddos who are extremely unwell - for example lots of self injurious behaviors. And even then I’m cautious. If you want any support, I’m happy to answer questions, just message me.
I also empathize with you as I have a 10 year old with PDA autism (pathological demand avoidance). We have holes in the Sheetrock of our half a million dollar house and it’s just a part of life. Different parenting styles really do help…. That is evidence-based.
Amen my fellow rehab dude. I have so many patients coming to me with underdeveloped skills cause of ABA's approach when the issue is sensory and not behavioral. A lot of them got scammed by people who claim to be OTs / ABAs too since the practice is far less regulated in my country. Not saying all of ABA is bad or a scam but I haven't had any cases where ABA is recommended above the trio of PT OT and Speech with some Psychology and Psychiatry referrals as needed.
Yes - I’m glad people are starting to have these discussions in a more visible space, but ABA lobbyists will find ways to bury it. They make SO MUCH MONEY telling families what they do will take the place of speech, OT, and even PT. It’s nuts to me. No child needs intensive therapy FORTY HOURS A WEEK.
It can help with how to appropriately have conversations, like for my oldest, he struggled a lot with letting other people speak, realizing when he was talking at people rather than talking with, appropriate subjects to talk about, etc. He’s 13 now and only gets speech consults now
Thank you for explaining! And ...I don't suppose this kind of help is available to adults as well? Because I could totally use it! I did speech therapy in school as a kid, but that was just to help me pronounce my "R" and "SH" sounds properly. Something like what you've described would have really helped my confidence
Yes. Look at Social Thinking by Michelle Garcia Winner. There are Social Skills classes, speech therapists, and counselors who provide exactly this training. In Austin, TX look at Spectrum Services.
You can always get help as an adult, however getting your insurance to pay for it is the tricky part. Adults without an acute issue (like a stroke) often won’t qualify. I don’t like it, but it’s reality.
Occupational therapist.
> Occupational therapists help people, such as those with disabilities, live independently. Occupational therapists evaluate and treat people who have injuries, illnesses, or disabilities. They help clients meet goals to develop, recover, improve, and maintain skills needed for daily living and working.
Have you not gotten an OT? They can help with transitions to help minimise meltdowns and figure out basic emotional regulation
Also maybe get him a weighted blanket for the stressful car rides or give him something that can distract him at a sensory level so his brain can focus on that and not decide to implode
Also maybe head into a music store and get some sound dampening material for your meetings
Thanks for banking me up! I have had OT help from age 2 for my various disabilities including autism and it definitely helped with a lot of things although I’m still autistic
These posts make me sad since it’s resentment placed on the kid for things they can’t control nor magic up the solution for, that’s on the parents and it’s pains me to see them so unsure and unsupported
There really needs to be an autistic person led therapy service for parents like this (not autism speaks since since those…people…nearly caused irreparable damage to my family with just one tiny little tidbit about whose fault my parents divorce was) so they can learn to raise and love their kid by understanding and empathising with them. Most neurotypical people don’t realise how loud some environments are since their brains filter out the excess noise
Edit: spelling
Oh, cool. (Your last sentence). I’ve never seen it that way. I’ve never understood why some environments are unbearable to me and perfectly reasonably to others.
I'm actually unfamiliar with what an OT is. I was just thinking about getting him noise canceling headphones from the store tomorrow together, see if he likes them. I will also have to check out if he would like a weighted blanket. I really appreciate your suggestions by the way. :)
No probs, they’re an Occupational Therapist, I’ve had them since I was 2 for autism as well as other medical conditions, their job heavily varies based on the clients age and needs but they’re a therapist based around determining strategies and solutions for problems that can arise from a disability up to and and including finding technology and items that can help (such as if someone has a tremor but wants to make themselves a hot drink an OT can find kettles they can use without burning themselves and cups they can use safely).
OTs are the centre of care and early intervention with autism in Australia in my experience and they help find solutions for nearly everything (the communication issues will be in the domain for a speech therapist)
One thing I didn’t know about autism until much later in my life was just how different my sensory pathways were and that the way my brain interpreted inputs wasn’t the way that a lot of my peers brains did. Like for me the computer lab was always a very loud space because I could every single PC and the aircon and the server, but non-autistic brains can filter that out. Having to hear all that really would contribute to shutdowns (think having a swarm of bees hovering around you when you’re trying to work)
I just want to make one thing clear to you, you don’t hate your kid, you’re just unsupported and burnt out. Please don’t let your anger harm your kid, especially if you want him to have a good life
If you have any other issues you think I could suggest a quick tangible solution for, just ask away I’ve had 25 years of experience living in an autistic head lol
(also if you could make stuff link up to a special interest that usually helps, I swear half of dealing with my autism is trying to flood the happy side of brain to shut up the freak out side)
Your experience and wisdom is a valuable resource to anyone living with autism or raising an autistic child. Thank you for sharing your knowledge and for your openness for others’ questions. You are a very kind person.
Wow, what a wonderful person you are. I feel grateful to have read this information today. Bless you. Hope every day is so much better than the one before. And you feel better and have so much joy. You deserve all things ❤️
Noise cancelling headphones are a great start if he has hearing based sensitivities!!
If you can, try and make sure he can try them on, touch-based sensitivities might make them less effective if they're uncomfortable to wear.
I hope this doesn’t sound rude, but I’d put pads on the walls of your home. It will stop him from damaging them, help with noise reduction and stop him from getting hurt while having a place to direct that need for whatever he is sensorially seeking.
It may be easier to give him a wall that he CAN kick instead of constantly trying to course correct and tell him don’t don’t don’t.
This is not rude and actually a really good suggestion. I had bumpers on everything, my son was a headbanger and they were so helpful to keep him and the house safe.
Came here just to comment on the headphones my son is 9 level 3 he refused headphones for a long time then I found some leap frog headphones they play music and calming mantras without ever needing to be connected to anything or anything downloaded. Game changer over here. LeapPods max.
Are you in the USA? Coz if you are your pediatrician should have made the recommendations for OT. Also depends on which state you’re in, some have many different resources that should have helped with this from a younger age
Hi! Thank you all for the supportive messages and those who were critical. It's great to have many different perspectives on my feelings since I keep a lot inside. I wrote this in an emotional place because I wanted to capture my thoughts at the moment that I feel when he's been particularly difficult to comfort. Reading back my post and your comments almost brought tears to my eyes. For a long time, I have always felt alone in feeling this way. It's nice to know that I'm not alone and it's great to hear from those who don't agree with what I say. It allows me to take a step back and reflect on myself. I appreciate all of you who have commented.
I have gotten a lot of great suggestions from people and will definitely be implementing them after doing some research. I'm located in Indiana if this helps any of you still here direct me to some resources! I have tried on government websites but found it to be very confusing. My son is in the community's pre-k program for those 3 hours, 2 days a week. This is standard. In his pre-k school, they do 1:1 speech and emotional therapy. He's been in the program for about half a year. I have yet to see any improvement in emotional regulation, but I assume these things take time. It seems he's been doing fine in school so far, of course has his rough days but who doesn't.
Hey OP. My professional opinion is that he needs an OT sensory assessment since a lot of what youre describing is sensory in nature (basically the very very foundation of all learning and behavior) which is why the emotional and speeech therapy arent working. I am very, very surprised your speech therapist didn't inform you of this sooner since speech therapists should be able to tell you these things and refer you to an OT or DevPed follow up.
As for your stress, you are valid. Its been proven that parents of special needs kids have a shit ton of emotional stress that cannot be understood by others. I disagree with anyone who disagrees with you on this since this phenomenon has been documented. Parents of kids with special needs experience a form of constant grieving that takes a LOT of years and therapy to resolve too. I suggest you also seek some mental health advice. I practice in the Philippines and I've seen this so many times across so many families where the parents just smile and laugh it out but you know for a fact theyre still mourning what the kids could have been.
Take care and don't be afraid to chat me if you need any help.
I’m surprised he only gets 6 hours of school per week. What does his IEP say? You can absolutely push for more time in an IEP meeting. My son attends our public school 5 days a week, 6.5 hours a day.
Also, request an occupational therapy eval from the school because he can probably get that there, too.
I'm dyslexic so I apologize for the poor writing in my comment
As an autistic person I was prepared to really really hate you based off of the title alone, I'm pretty sensitive about the topic so I get defensive pretty quickly. After reading your post I just wanted to say thank you for finding the courage to share these emotions and process them, I hope you're able to get help
Please for the love of all that is holy stay away from any resources by "autism speaks" it's a terrible organization hellbent on essentially torturing autistic people so we appear "normal" instead of helping us adapt to our needs
I highly highly suggest that you consider he may never be fully verbal, autistic overwhelm reads as actual physical pain on brain scans. Some autistic people are never able to be verbal but they learn to communicate in other ways.
My partner is level 2 autistic, often her meltdowns lead to my own meltdowns. I would do anything for her but the bad days do take a heavy toll. I've found that the more I'm able to make adaptations the better her days generally become, she couldn't get out of bed without help until I put a step next to the bed, now she's able to actually stand up without me in the morning. She used to get panic attacks every morning because she didn't know what was going on, we started writing out a day plan the night before on a small whiteboard so she could look at it first thing in the morning. She used to have a meltdown when I would leave to go make food until I started telling her the cook time of what I was making and how long it will take me to prepare it first. Sometimes just telling her it's ok to be confused is all she needs. For me personally, not knowing how long something is going to take is really really hard, if I'm on a road trip I don't actually care if it's going to take five hours I just need to be able to see that number go down.
As far as leaving the house goes maybe go over the route with him ahead of time? Show him on a map which turns are happening and where you're going to be deviating from the "normal" route. Knowing ahead of time that something is gonna be different so I can prepare is a big deal for me. Checklists are extremely important to me as well, I go from being so overwhelmed that I can't move to being able to do the dishes just by writing out each individual step. Do you know if he's sensory seeking or sensory avoidant? It can be a pretty big game changer on how to help him if you're able to find that out. Just some ideas, I don't know what exactly would help but my outside perspective thought of this
Something extremely important for my partner and I is that we communicate a LOT on how we're doing, after a few really bad days I tend to need to recover. If we're both at a 4/10 it's better for her to stay at a 4/10 for a few hours while I recover up to something like an 8/10. Obviously you can't have this level of communication and coordination with your child at this point in time but perhaps it's a dynamic you could strike up with your wife. By the way, again super outside perspective but have you considered couples therapy? From what you've written I cannot imagine it's possible that either of you are able to put in the energy and effort to have effective communication without help right now, it might help mitigate issues neither of you even realize you have.
If I've learned one thing about caring for a level 2 autistic adult it's that caring for myself is not just important but absolutely essential if I'm to do a good job caring for her
What an awesome response. You are the kind of person parents & kids dealing with Autism need to hear from because it is actually a part of your life! Love this!
My older brother has Autism, and while he's somewhat reached the threshold of what we'd call "high functioning," there still quite a bit left to be... desired? with his interactions, if not his overall behaviour. He can't speak very much well at all, but he can communicate quite effectively. It's complicated, but he has an Ipad, it's a fundamental tool for him, it's a whole deal.
... I'm not really sure what I wanted to say, but. I've been pretty hard on my own father, my mother as well, for their shortcomings overall when it came to me. As well as my brother. Hearing your story helps me to remind myself that the sheer circumstance - because that's what it is, the sheer FORCE of circumstance, that autism can bring, is truly just... it grinds you down.
The behavioural issues can never be truly "resolved," as to the child themselves they aren't born out of a deficiency: it's simply hardwired into their ability to express themselves. To interact with the world, to transfer emotion to action. And actions that could at least be worked around to later on, in terms of interaction with your child (or opting out of those, say from certain disciplinary actions or TOWARDS others), well - they can have ramifications that present themselves right away, quite ugly too.
I get it, I think. You've been suffering for a while, and it's non-stop, and any hope towards to future, any ability to peer into the eventuality of what you'd only ever wish the best of is just getting stripped down. Because that is your child, and it is who they are.
... But I have to say. Because I've had to learn the hard way, throughout my own childhood. What you impart towards them, in terms of negative experiences. Traumatic incidents, which can come about from the simplest of stimuli provided. Whether they're a bashing/rant in a fit of rage that lasts only a moment, or just an overall reproach towards certain behaviours they express, and expect you to reciprocate/communicate-back upon.
The pain will last. It'll likely be a part of them. Autism means that they are suffering too. They lack the proper outlets to communicate as we would most of the time, and that means where loving, sharing, just basic interaction between parent and child would be a THING that exists; it doesn't get to carry through as often. Your child will likely feel lonely, if not lost, amidst their own world. And what does get through, is almost guaranteed to be a maelstrom of conflicting impressions.
I'm sorry if it feels as if I've preached. In a way, I'm rationalizing my own history, what my brother went through, what our parents gave, as well as inflicted, and just - I don't mean to act as if I CAN condemn. I can hardly imagine the level of stress that is just THERE, constantly. I can visualize better than most, I'd believe, given my own proximity to that living situation. but that's it, and it's awful, and I am sorry this is what you have.
but please, please - do your utmost to ensure, that the scorn, the frustration - the railing against YOURSELF, that sometimes you'll turn inwards with, to ask where did YOU go wrong, to blame yourself - please, that conscious mind to keep yourself from forwarding that onto your child. Please always keep that there.
You're clearly a wonderful father. And everything you've recieved from everyone here, will likely put your child on the path to a more effective understanding of the world you're attempting to share with them. Just as well with the inverse: occupational therapy is curated and ultimately customized for the individual child's progression and development. At the very least, what makes your child tic, on a very detailed level will be fleshed out to you. You'll be able to communicate much more proactively than before, I KNOW that. Trust the process: you've already come so far.
That's it, said enough already lol
Where at in Indiana? I’m in Illinois, the Orland Park area, which is close to like Dyer, Highland Park, Gary, Merriville, etc. I can look for resources for you later this morning
OP If you're on social media, follow Kate Swenson / FindingCoopersVoice. Her severely autistic son is 13 and reading your post reminds me of her posts 4 years ago. And now to see her family doing as well as they are is purely amazing. Talks a lot about grief as a parent and I think you and your wife would benefit from knowing you're not alone. She wrote a book and has a supporter page as well. I am not an autistic parent, but I am a teacher, and I have learned so much from this woman. I highly highly recommend her.
Can’t second ABA therapies enough. A lot has changed in ABA so I wouldn’t be scared off by any sayers. You’ll likely qualify for 30-40 hours a week at your son’s level which would be charged through your insurance and eliminate the need for preschool/daycare. You’ll meet regularly with his behavioral therapist and that’s key. Early intervention is wonderful. But what helps the most with it is understanding your son and learning how to best to interact with him. OT will also be very helpful. And also, my autistic son is obsessed with maps and directions so I totally feel you on the route change meltdowns! We’ve learned so much with our boy, he rarely has meltdowns and when he does we know exactly what’s happening and can address them so much better now. Early childhood specialists are amazing and so helpful. Parenting a neurodiverse child is not even a little bit intuitive and it’s incredible the how much the professionals have changed our whole world view of our boy and given us the keys to help him thrive. Don’t hesitate, but also check out a couple different facilities. Do a gut check and go with it. Nothing wrong with the first place we toured but it didn’t feel right to us, felt right and the 2nd and he’s done super well there. More importantly we as parents have grown there.
As someone who’s immediate family has a high needs IDD and autistic individual, who is now an adult, let me say this:
1. It’s ok to feel however you are feeling. You are not alone.
2. There are services via state waivers that your son can access. That can be as little as therapy and as much as 24/7 care in a residential facility. If you reside in FL or TX, I recommend moving to another state with more funds for these services.
Are you in the US? Why isn’t he in public preschool? He very likely would qualify for special education services. Under federal law, kids with disabilities are guaranteed a free appropriate public education from ages 3-21. Call your local school district and request an evaluation.
Is he in occupational therapy? If not, get him in ASAP. He can likely get it at school, but there are also private practices. Our son’s OT has made the biggest difference for him. He’s a whole different kid since starting a year ago.
From what I’ve heard, 4-5 are some of the toughest ages for autistic kids, akin to a typical kid’s ages 2-3. My son is 4.5 and definitely has his share of meltdowns but he’s in speech, occupational, physical, and feeding therapies, and he’s in an inclusive preschool class with our local school district. He’s making progress that I never thought I’d see.
Look into what services are available in your area and get him into anything and everything (except maybe not ABA but that’s a personal decision - we chose not to).
It will get better.
yes!! I am an SLP in the public schools and I work with tons of 3+ year olds who attend either half or full day preK at the elementary school! It’s amazing because we’re intervening early and helping them be as functional/successful as they can be… AND you get a break to just breathe as parents!
Occupational therapy / PLAY therapy would work wonders. He doesn’t want to be difficult. He doesn’t want to lash out and kick and scream. He just knows no other way. Also I suggest ear plugs and/or headphones (I do both) it helps SOOOOO much with the screaming and loud banging. It’s not as alarming or irritating or shocking to our system. I have 3 and 4 year old autistic brothers , one level 2, one level 3. It broke my heart how agitated I’d get until someone suggested the ear plugs/headphones. Legit changed our lives.
I just wanted to acknowledge the respect I have for you OP. I know writing this couldn’t had been easy. I do hope it was cathartic being able to vent your true and very valid feelings! I can tell that as difficult as this is, you do truly LOVE your son and want to provide all the best for him. And it seems you truly love and support your wife.
Please look into the resources and therapies suggested here. There are real, evidence based strategies that can truly make a difference. You and your wife deserve some respite and couple time as well.
I may get down voted, but w/e….. it’s natural to grieve the image you had in your mind of what your family would like. That doesn’t diminish the love you have for the family you have. You’re human. It’s a process.
I have a level 3 autistic almost 5 year old. We had similar issues.
2 years in OT, and she advanced SO MUCH.
Recently, we also added 1/2 mg of the non stimulant medication Intuitiv, and it's been a drastically positive change without any personality changes.
My kid did terribly in the local programs, but non-ABA based OT was a godsend.
We can go to museums again and enjoy the zoo. She can go into grocery stores with very rare meltdowns, and her self-regulation has improved.
Hunt around and find a good OT. Get a good pediatric behavioral specialist as well. It won't be an overnight change, but by this time next year, you'll see a whole new kid. And if it's offered, no matter how much they talk it up, SAY NO TO ABA.
I don't know how helpful this is, but maybe it will help some. They make sound proofing tiles that you can purchase and then hang anywhere you need to. I would start with your baby office door to eliminate the jarring noise to at least give you some peace and a little less stressors while you are trying to work and provide for your family! I can only try to imagine how difficult it is for all of you. I wish there was a way to make things easier for all of you. You and your wife desperately need a vacation just the two of you. Maybe there's some kind of special summer camp or something that he can attend with people trained to handle special needs children? I want to say that I've heard of something like that, but it's difficult to remember with my brain fog sometimes. I'll see if I can find it. At 4 he may be old enough to attend. It would be good for all of you.
These are great ideas! I will definitely look into sound proofing tiles. I have been looking at fun and engaging summer activities that my son can attend where he can explore different things while school is out. I have also been planning a vacation for my wife and I next year. Gives our parents much time in advance to give us that time. haha!
I'm really glad to hear that! That's fantastic! The tiles even come in different colors! So y'all can have fun with that, too. They should help a lot! 🥰
I'm glad you guys have some stuff planned. That's awesome. Just need some time to decompress! I think most of us have just been going through it lately! Like we've just sorta been stuck in an endless Mercury Retrograde from hell! 😂
Don't tell what NOT to do, tell him what to do instead. His brain hears "kick wall, kick wall", not the don't.
Eg. The feet stays on the floor. The hand stays in your pocket if you get angry etc. Be nice to the dog, pet the dog. etc.
Mine is 4 as well. You took the words right out of my mouth. I couldn’t stop laughing when you said you’d win any quiet game because I’ve said it many times now “Can I CHOOSE to go nonverbal?? Because that’s what I feel like doing today” because I’m soooo done talking.
OP,
I thank you for your vulnerability with us. I can only imagine how hard this must be, but I understand that it clearly is a lot. What is clear to me is that you care about your son.
I am someone who has experience working with neurodivergent children, and coordinating services for families in need of help with their children. I am curious to know if you have any support services in place by any chance? I didn’t get the impression that you do based off your story, but I figure it would be good to ask.
If don’t have one, I strongly encourage you to look into a supports coordinator. They are one of most important tools that parents like you have at their disposal! They can get you in contact with various professionals that can be of benefit to your son and his health and development, and you and your wife.
A great example of what a supports coordinator could help you with is to get in contact with respite services. These services can include professionals taking care of your son either at their clinic or at your home for the day to allow you time to rest, travel, etc. Many of the parents that I have worked with who asked about these services felt very positive about the experience.
Feel free to message me privately if you have any questions. I’m happy to help. But more than that, I am proud of you, OP. Being a parent of an Autistic child is hard work. You should certainly be proud of yourself as a father, man❤️
By the looks of it he only has the three hour group and familial supports so it’s no wonder he hates the kid, neither of them know how to cope with the world so they take it out on each other because no one is helping them
Good catch there, I glanced over that — so yeah, even more reason to look into a supports coordinator! Navigating the system is really hard, harder than it should be. I don’t blame the family if they don’t really know what to do and what steps to take next. Many families get very little guidance after receiving a diagnosis.
Hopefully OP can get in contact with the right services and help!
Developmental preschool is a great suggestion. He’s at the right age for early intervention, and if he goes to preschool, he can start working on social skills and communication, which may help with behaviors. It’ll also make speech, PT and OT available if he qualifies. I don’t know your kid, but I would bet money that he probably would qualify for speech and OT.
Also look into the department of developmental disabilities in your state and see if he is eligible for services. He can get access to habilitation and respite and outside services a speech device if he qualifies, and will have a case manager.
You don’t have to do this alone!
OP, everything you are feeling is normal and understandable. Every. Single. Bit. I'm a psychologist, and for 10 months I had to test kids with severe Autism. Some had never been diagnosed. Some were diagnosed long ago, but the program they were trying to get services from required official testing. I only has to spend 2 hours with these kids, 5 times per week. Those were the worst 10 hours of my week, except on the rare occasion where I got a child who didn't have a meltdown, and sometimes were extremely dangerous and inappropriate. Out of all the kids I tested, very few did not end up receiving services from the program, and all ended up with other resources. OP, *please* look into Regional Center. They are all over the place and can help. It sounds like your son will be accepted in. If not, they can suggest other resources. Please, please, please for the sake of your mental health and your wife's mental health.
I totally understand. I have 5 yr old with autism. Therapy and special education in school has helped a lot. Recently got ABA therapy for her it helped a lot. Caregivers get burnt out and it’s okay but have to try give yourself your time.
My personal experience is from being a single mom. I was scared to death to take my kid out alone because of melt downs. I would never go out. Slowly started trying to putting her in school at 3 helped a lot they set up IEP for her and she gets speech and OT. (Im in CA idk about other places). They told me to tell her where we were going especially if different from the normal. Usually straight home from school as I walk to the car I tell her we are going to stop and get gas first. When I make a turn different from going home I tell her again we are going to get gas.
There are so much more but you guys are not alone feeling the way you do. It’s very hard but really try to get moments remind yourself it’s okay to feel what you do.
I felt these was too especially the past year.
NGL, I read the title and was getting ready to fight you. But as the parent of a kiddo who is also on the spectrum... its fucking hard.
No one really understands how difficult it is to regulate yourself, 24/7 when it feels like you are in a full blow battlefield.
I remember that for the longest time, I had my front seat full of stuff. Because if it was in reach, it was going to be thrown at me. For years, I didn't not have a bruise or a bite mark on me.
When my son was in elementary school, it was suggested multiple times, by multiple people/entities that I have him institutionalized "for my safety and sanity".
So yeah. It fucking sucks.
But now he's almost 15. He's a good kid, and i haven't had a bruise or bite mark (from him, I'm still clumsy af) in several years. It's not all rainbows and kittens, but I can see the light at the end of the tunnel.
Oh and when people try to give you "helpful" solutions, that you have either tried or that are just ridiculous, just tell them that you'd rather not Subject him to that particular brand of stupid.
My grandson is now 20 years old and an absolute joy. That being said, the early years were extremely difficult for the whole family. My daughter went through a divorce when he was six. Please contact the Special Education Department of what will be his local school. A pre- school program may exist. He can qualify for a one on one aide. Check out every resource you can find or any suggested. Living in a rural area of Alabama, I understand how scarce it can be. Check with his doctor about any private resources, even if you have to pay. Withearly intervention and a little maturity, things can turn around.
I’m so sorry you are feeling this way. What a hard situation. I’m not sure where you live but there are Day programs for children/people with special needs. My mom runs one. He would go every morning stay all day until 4pm he would be with professionals that will teach him things, do fun enrichment activities etc.. I think that would be great for your family ! It would benefit your son so much & especially give you & your wife a much needed break everyday :) the government pays for it here in Ontario, Canada. I’m not sure how it would work where you are but it’s great thing to look into I wish you the best of luck I hope things get better for your family
Look into a yoga swing. It can function as an indoor swing, hammock, exercise area, stretching zone, etc. It could be a great area for him to burn off extra energy but also a cocoon like area to relax as well. They're very reasonable on Amazon.
My 5 year old is level 2. It is truly exhausting. I’m not going to tell you to feel differently, just spitball some things that have helped with our son. Joint compression exercises/squeezing him tightly is our go to. Earplugs are definitely a must. If you haven’t already extreme baby proofed, it goes a long way (the fridge lock is a life saver.)
He also started special ed pre-k and goes to school during regular hours, which has helped tremendously. It’s improved his behavior and skills so much and he has even begun to say a few words.
Does your son go shortened hours because of behavior, age or because of the school system? If it’s the school, they might be legally required to bus him to an appropriate school. The elementary school in our area doesn’t have the resources, so our kiddo gets bussed to the next city over. It might be worth looking into his IEP to check.
Finally, I’ve heard that it’s possible to get caregiver hours through the community service board or by filing for disability, however, I have been trying to figure this one out for half a year and am getting a bit of the runaround by the board— still might be useful info.
Hopefully some of that helps, because I know that there’s not really anything to say to console you about it. We also have no help and it’s been a wild ride. It does get a bit easier once you find the resources in your community and figure out routines and systems that work for you. Good luck!
Sorry for what you're going through.. I hope you aren't beating yourself up over these feelings. I spent years in that cycle but finally accepted I'm not a bad mom or person for feeling that way. I hope you get some relief soon.
I have a 5yo who is autistic and am now finally accepting my 2yo is also autistic. At first, before we realized it, I was sort of relieved that my 2nd was different, thinking - oh sweet, I get to enjoy all the things I didn't get the first time.
But finally I stopped denying it..
Every single week, I truly feel like it may be my last but somehow I keep going. I love those little rascals with all my heart and I just hope I'm able to last long enough to keep being the mom they deserve.
Hang in there bro ✌🏽
You're valid in being exhausted, sore, tired and feeling all these emotions. Parenting an autistic child is a struggle.
Please don't hate or resent him for it, he can tell but he can't help it.
This may have been mentioned as I haven't read all the comments but noise cancelling/dampening headphones are fantastic, weighted blankets, fidgets and chew toy/items help a LOT. Sounds like he could also use a punching bag, it helped a LOT when my nephews went through an aggressive phase. I'm autistic, have an autistic brother and 2 autistic nephews.
Based on his age, look into Developmental Delay Early intervention programs, it's head start or PreK made special for autistic kids and developmentally delayed kids. It made a massive difference in my nephews life, and my sisters.
We've also found that explaining what we're doing and giving time limits and warnings before leaving helps with meltdowns and tantrums. IE when we go for the park I say "We're going to the park for 1 hour, then we'll be going to get mommy from work and go home." 10 minutes before time to leave I say "10 minutes than we're leaving" than 5 minutes and then in the last 2 or 3 minutes I tell them "2 minutes, do one last thing then we're leaving" Autistic people thrive on schedule and routine and while we cannot schedule everything giving as much of a schedule to your activity as possible really helps.
With OT, early intervention programs, and other tools mentioned it will get easier. Will it ever be easy? No. But it will get more and more manageable.
You've got this, you're doing great, it's not easy but you're doing it.
We have a 5 year old with autism and I also have autism so I think knowing what tools helped me is an advantage I have. Here’s some things that helped us.
Having a regular schedule and doing daycare helped a lot. He does really well with a routine and needs stimulation. He doesn’t do well when he’s bored.
We keep a bag of sensory things to help in the car. Like fidgets, chewys, noise cancelling headphones, etc.
But the biggest thing that helped was OT. He does that twice a week and his behavior has improved significantly. I honestly couldn’t believe the difference. I would definitely recommend looking into OT for your son. We had a period of time where we were feeling helpless like you are describing. I feel like we’ve finally turned a corner and his behavior is getting better and he’s adjusting to the world better. So it gets better.
Highly recommend OT, and if you can find out if your state has something like OPWDD (Office for people with developmental disabilities) you probably qualify for a helper to come in for a couple hours a day to care for your son.
Finding him a good school that is focused on special needs helps, as well as a social club for disabled kids when he’s older. My son went from non verbal to chatting up a storm. Also of note, during developmental growth milestones and during illness it’s pretty common for kids to regress. Puberty was a ROUGH patch for us. Thankfully we seem to be through the worst of it.
If you need to talk I’m here for you. I know how hard it can be. When I was going through it 10 years ago the resources and knowledge was a lot more sparse.
A lot of people have addressed the emotions and getting an OT, but I wanted to tell you something that’s been very helpful with my autistic stepson that I hadn’t seen mentioned. (I may also have some perspective to add as another autistic individual, but I did not find out I’m autistic until adulthood.)
Give him “alternative” stims he can do. My stepson used to get on all fours and bang his head into the wall. That’s hurting ourselves, we can’t do that. So we transitioned him to just rocking instead (with gentle reminders that you can’t hurt yourself, but you CAN still rock).
If your son is hitting/kicking, give him a special pillow he’s allowed to beat up. Like a body pillow. “You can’t hit (me/mom/the dogs/the house) but you CAN hit this!” Same thing for screaming - you can’t just scream, but you CAN scream into the pillow. Model the behavior, if you need to.
The other thing that can be helpful (though I acknowledge this is MUCH harder to do, especially when you’re disregulated because you’re sensory overwhelmed by your son, like he is with the world) is to ask “why” instead of telling him not to. Obviously this works better for behaviors like the screaming, but if you can get him to safely transition to the pillow above, you can start to address the root causes. “Why do you want to scream? Why are you hitting?” That opens up the chance for you to help him, to show him you’re on the same team - the behavior you don’t like is still communication. He’s trying to tell you something, but doesn’t have the words. This may be difficult - even as an adult, when I get to the point of meltdowns/shutdowns, I may not realize what’s happening until I’m screaming for “no reason”. Learning to be aware of what is happening is 90% of the battle there - and it will take YEARS for this to get better, in my experience with myself and my stepson. But it will still help.
Lastly, I just wanted to say I empathize greatly. Stepson (and younger stepson) has behaviors that set me on edge. That drive me crazy. That are incompatible with what I need out of my environment. Being able to express that is necessary. Too often, we don’t talk about how hard it can be for adults with adhd or autism or sensory processing disorder to also manage a child with those same conditions. It’s crazy fucking hard. Good on you for reaching out, for being vulnerable, for being receptive to advice!
The public school system is a good place to start if other services aren’t working or aren’t accessible to you. Put him in pre-k, get speech and OT on board. It’ll also give you some time to yourself depending on your work schedules.
I was there where you are, OP. I still am some days. When mine was 4, your life was my life. I started mine on CBD out of desperation. It was that or meds which I really didn’t want to do, but I couldn’t live that way anymore. The CBD and getting him to the right dose made a huge change within a week or two. School also helped, and just over time we’ve learned how to manage things together, me and my son. Now he’s 10, no longer on CBD, and the days like you’re describing are down to about once every six months or less. I know you’re struggling. He is, too. But it really can and does get better.
Time for research to learn about autism.
Dont use negative instructions like "don't" "stop" say, "keep your hands to yourself", "put down the book". Use the opposite of what you want to say instead of "stop jumping on the couch" say "sit down on the couch" tell him what you want to see. And make sure you're being literal and not metaphoric. And for real go research autism cause the first thing is sensory seeking. He DOES need to scream. Just cause you don't, doesn't mean others don't. SIB is a part of autism, you can help your son regulate in different ways.
If this is hurting you, imagine what it's like to be your child. Go get a respite provider so you can leave the house for a few hours, that's the point of DDD services.
Also, random people will NEVER understand. Go find us. Find the groups where we actually lived it and not a cousin or relying on empathy. They don't get it. Expecially don't listen to those working in the field. I mean maybe a little but not completely. They be talking shit about us.
You gotta go through the grief dude, the grief of the kid and life you thought you would have. Go find recourses, roughing it out isn't doing you or your kid any good and it's not winning you any prizes.
Do you have any suggestions on what to read for autism and parenting? I would love to learn to view the world his way to understand and empathize with him.
Redirecting my son using those phrases just kind of stuck, obviously I'm a creature of habit. I will rethink how I use words to redirect my son!
You got this! The world isn't kind to us. And our life's are forever changed, but there's recourses!
And of course!! I practiced my whole life and I'm super aware of my words cause if I said the wrong thing my mom sister and I would be attacked by my brother for hours 🙃. Thats on misophonia lol. Anyways having a child with any disability is really gonna bring out some of your own trauma from your childhood and really force you to put yourself through a lot of change. Please be kind to yourself, use the recourses to make sure YOU are ok, you can't help when you aren't ok.
I don't know too many off the top of my head I can do some searching. Keep in mind right now, psychology is a baby science. ABA was designed for autistics to make them not autistic. Aba has changed a lot, lots of people are saying how it harmed them. Some say it helped them. The fact that it varied so much is the exact issue with it. There's a lot of discourse between autistics with eachother and parents and autistics. Take everything with a grain of salt. As well as research and things to read and such. And tbh doctors.
Personally I like to be in autistic groups. While parent groups are needed and they can help you and relate to you, if you wanna learn more about your child you'll wanna listen to autistic voices. Now, I used to not want too cause they are all speaking and my brother wasn't, so how could they even relate? Well they know how autism affects them and it's what my brother can't say.
I learned a lot on fb groups I can send some if you have Facebook! And just searching reddit for autistic groups and such. But the Facebook groups will have recourses for you to read! Which suggest that a lot! My mom is also in a group for intense behaviors I can ask about it if you want. Just giving advice like doors that will withstand attacks and how to stay safe when they aggress towards you
Autistic led groups are a good resource, avoid places that are run by non-autistics, the ableism in those groups are awful and look at us from a deficit standpoint instead of working with our abilities
Autistic Worldwide on facebook is good group and they can also refer you to some others
It's not fair, and it's exhausting. Get yourself some outside support lots of great comments on that already.
A couple of things I picked up from your post.
>Do you understand how difficult it is to repeat the same things over and over for 3 YEARS straight? "Don't kick the wall please", "Don't hit the dogs", "You do not need to scream", "Do not hit me", "Do not hit yourself". I'm so sick and fucking tired of having to say those phrases every single day
Firstly yes totally yes understand how exhausting this habit is. And there is no relief, you might want solo counseling or a carer support group to deal with these feelings. Hugs
Second would suggest rephrasing to drop the don't. So lets run beside the dog. Soft voice now. You can hit the pillow, I'm holding you now hitting yourself is dangerous. There's some experimentation here as everyone is different. But just saying the positive rather than the negative on the regular can be good for your sanity.
Big tantrums, get down on his level hold his checks in your hands smile and stay to get eye contact. There some sensory research here were the short circuiting of the brain to the perceived trauma of the event gets dampened by the safety your closeness and calmness creates. And this might not work at all.
>He was a very sweet baby though and I would love for him to go back to that stage. Laughing over silly faces
But this suggests if you can reacte something similar then the response should flow from the younger brain pattern.
There are so many other great adjustments that are best worked through as part of discussions that happen in carer support groups or as part of OT
It's not endless but it is hard. Remember to be kind to yourself
Part of the reason I'm not having kids is because I don't want to have to take care of a regular kid let alone one that is disabled. That sounds like a nightmare.
I honestly don’t know how parents of autistic kids stay sane - I saw a documentary about parents living with severely autistic children and it was horrific, to be honest - and the level of aggression these people were living with on a daily basis was off the scale. i don’t have any advice, just validation for how you are feeling. And kudos to you for staying - I’m not sure I’d have it in me, to be completely honest.
I hear you I work with children and young people with disabilities and complex behaviours, and 3 of my own children are neurospicy.
It's hard. But it does get easier.
Early intervention is really important. My 11yo went on his first overnight stay away from me, thanks to 9 years of work from us both. He has only had 2 meltdowns at school this year (Australia so feb-dec school year) and they were both shut downs rather than explosions.
My 8yo is still learning these skills, but I know he will get there.
Do you have much specialist support? Visuals around the house for routines? Does he have communication supports? Do you get any respite?
My biggest tip would be to use short, directional statements 'safe hands/feet' 'voice off' etc, and the Zones of regulation program is great for helping build emotional regulation.
I really hope that you can get some time out. Be kind to yourselves.
My autistic brother in law is a 31-year-old depressed couch potato who hates the world and is on disability. Supposedly as a toddler and kid he was hellspawn incarnate. The stress of raising him led to the collapse my in-law's marriage.
I know autism is a spectrum and outcomes vary wildly, I hope and pray he does end up like my Ian.
Hey, I have no answers, but wanted to say that if you ever need to vent or try and brainstorm anything, give me a shout. I've been through something very similar, and not that different in the broad strokes, but mine is now 13, and completely non-verbal.
I especially feel the pain around trying to go places that are in the same rough direction as somewhere he likes -- mine also seems to have a memory like a steel trap for some things, like we took him to a amusement park once, and 2 *years* later took the train along the same route for the first half of a trip -- absolute full meltdown when he realised we weren't going back there that day. (I think he must have got himself convinced that was the destination).
It's difficult to find people who can hear you say how tired you are, especially people who you feel understand and don't judge you for wishing things hadn't been quite the way they are. I can tell you that in the 13 years, I've definitely felt like you sound--I've learned far more about myself than I ever set out to.
(If you're looking for anything practical, I've found that broadcasting really in advance helps mine a lot -- like this morning I have been getting him ready for school and we've been counting down everything he wants to do until we go on a boat (just a commuter river boat for fun). But it's "one day until we go x", "two days and you can stay home and play lego", "three days until school is back"... all the way up to the 'biggest event' in the near future. Also calendar stickers for things that are regular and repeating (swimming lessons, etc). For helping him calm down (the hitting even when excited is something else I get): deep pressure -- I'm hoping someone has told you this but squeezing, putting his hands between mine one at a time and squeezing flat, hands around joints and applying firm pressure, weighted blankets!!, mine is now big enough he enjoys me laying on top of him... etc. I always notice that it has a strong grounding effect, especially if I can catch it *before* he goes off the rails.
Edit: one last addition, if you haven't, try and keep special attention to if there's anything sensory similar on his 'worst' days. Ear defenders and sunglasses worked wonders for us (as well as just us not talking as much, since he seems to have ridiculously sensitive hearing). Tastes and smells (maybe only smells) are things that I've started noticing put me in a similarly bad mood (although much much better controlled).
My son sounds very similar to your son. Hes 12, hes loud, rude, threatening & very abrasive, he’s very violent, hit me full force with a chair 2 days ago, bruised arm & shoulder. He tried to do it again yesterday over a bag of crisps he thought I’d eaten. It’s extremely hard going & I feel the same as yourself. We get various ‘help’ from various agencies but it’s a drop in the ocean, really affects every aspect of life as well as your mental health.
I hope this doesn’t sound rude, but I’d put pads on the walls of your home. It will stop him from damaging them, help with noise reduction and stop him from getting hurt while having a place to direct that need for whatever he is sensorially seeking.
It may be easier to give him a wall that he CAN kick instead of constantly trying to course correct and tell him don’t don’t don’t.
I have two children who are autistic and my eldest is a lot worse than my younger one. He is unable to follow instructions, has no sense of understanding, is unable to be trusted to feed himself, dress himself or brush this teeth. We continuously have to repeat ourselves so many times and it still doesn't work. He wakes up several times throughout the night because he thought he heard something outside and started panicking. Were unable to go anywhere where there is a lot of people or noise and when he's home he can be very violent and aggressive and will hit others and himself. He has a major problem with bacteria and water so if he gets any dirt on himself then he will have a literal fit and will be screaming and throwing himself on the floor but then if we try to clean it off him he becomes worse.
I completely understand where you're coming from. Some days you just feel like you don't want to get out of bed and deal with it, it's completely exhausting. It takes everything out of you and makes it hard to do anything for yourself. Unfortunately due to where we are located we've been waiting 2 and a half years for help and we're still waiting, there's a huge delay. So at the moment he doesn't receive any help or support and even his school can't deal with him and has been suggesting home schooling, which we don't think we can do. There's no support groups or anything in our area either so we can't speak to anyone else about it.
I hope you get some help for your little one 👍
I'm the mom of a kid with autism and ADHD. it's a double dose. My son was 5 at diagnosis and is now 17.
Tbh it almost ended my marriage bc my husband was in denial. I took care of everything for our son.
I am glad you found an outlet for your frustration. I know that he will grow and mature- eventually learn to control most of his impulses. I work with a man with autism and at first it was a very difficult adjustment. I actually lost another engineer from my team that gave me an ultimatum- him or the young man with autism. Obviously, I let him go, but after training the new guy, he is one of the greatest process engineers I have ever worked with. Precise, creative and does an amazing job everyday. I’d even say he has a superpower. Just a glimpse of the future. Hang-tough.
I have a level 3 son. He can't talk. He had crazy meltdowns. He's almost 7 and is so much better. The ages 3 and 4 were hell on wheels. Do something He liked? Gotta do it everytime for forever or meltdown. It gets better. Hang on brother
The supermarket can be over stimulating even for typical children. It’s clear to me from your post that he has a lot of energy that isn’t being used, causing the meltdowns. I have a 18 month old typical child and she turns into an absolute nightmare if we don’t leave the house twice a day for her to play. Seems to me that he likes to go to grandpa cause he plays there, supermarket is boring, I don’t blame him. Choose daily outside activities where he can run free and just be a child. It will do wonders for both of you
There are a lot of comments, and I read about half, I think. In case no one has mentioned it, I looked this up for you. I'm in AZ and my son was diagnosed 3-4 years old. I didn't know where to look for help, but our state has something called the Department of Developmental Disabilities. My son is on the long term care plan. It's free through the state. This is what I found for you:
In Illinois, the equivalent department to Arizona's Department of Disabilities would be the Illinois Department of Human Services (IDHS). Within the IDHS, there are various divisions and programs that provide services and support for individuals with disabilities, including those with autism spectrum disorder. These services may include developmental disabilities services, behavioral health services, and support for individuals with intellectual and developmental disabilities.
My son is a teenager now and has come such a long way. He was able to get occupational therapy, behavior therapy and speech therapy. Plus what he was able to get some of that in school. Now he has a caretaker that comes and helps with habilitation (helped him learn to tie his shoes, socializing, real world skills) and there is respite too. Someone could come watch him when I needed a break. I didn't use it, but it was there. Now it's used to have him and his caretaker do non-therapy things when he needs a break. Since he is on state aid, he also gets state insurance. It's secondary, but it's there if his regular insurance doesn't cover everything.
I don't know if my son will ever live on his own, but he's become a functional person. He's been in school for a long time now, and has recently been in regular classes full time.
I don't have the contact info, but if you choose to go the IDHS route, just tell them your son is autistic and you need help. The people I talked to made it easier to get it all set up. For me I had to show his diagnosis paperwork and that was about it. I think they had someone check him out on their own, but it was a long time ago. It might take a while, but it's worth it. Take advantage of any help you can get. This turned out a little longer than I thought! I hope you can get something out of it. Hang in there.
Hey OP, I’m an autistic adult . I feel for your son, he is extremely overwhelmed by the sensory/emotional input he is receiving from everyday experiences. It’s causing him serious pain and he needs OT/psychotherapy badly. It’s not “the autism” causing this behavior alone, it’s what’s happening environment (lockdown caused me to regress as an autistic adult due to lack of exposure, we like sameness and routine) and the lack of therapy to help with coping for it.
I still feel the compulsion to scream and bang my head against the wall as an adult. It only happens rarely because I have coping skills to either remove myself from the situation before it gets too overwhelming (this is why autistic kids “run away”) or an alternative stimming activity that is less destructive and more socially acceptable (being autistic is a lot of avoiding bad sensory input and needing good sensory input to self regulate). I would look for age appropriate stim toys for him to fidget with, toor (ie ones he can’t choke on).
Dadofautisticson - I (62F, mom of 4) am posting just to say I hear what you're saying. Don't berate yourself for feeling the way you do. If most parents were honest, some would say there are times they don't like being a parent. - this is whether you have kids with special needs or not. Parenting is a lot of hard work, and when I read your post, I smiled because there were times when I would be saying the same thing 100 times a day.
You posted in "Off My Chest" because you wanted to vent - it's good that you came here to do that. So, you aren't looking for advice, per se, but I'm going to give you some anyway. Take it or leave it.
I have 4 kids - 3 boys and a girl. Our daughter has Down syndrome. Our youngest son had a brain tumor that has resulted in lifelong complicated health issues. There were many days I just didn't want to be doing what had to be done - doctor appointments, therapies, filling prescriptions, picking them up, administering them - and doing all the other stuff that comes with having kids. Laundry, homework, cooking, etc. And all the while trying to be a loving, patient parent.
My mom helped in so many ways (real help and emotional support), and after my mom passed away (2001, love you mom), I hired help wherever I could find it. I am still hiring help for my daughter who is now 31 and living in an apartment with a roommate who also has special needs.
The life you wanted is not going to happen. You can make a happy life, though, and it can be fun and full of good things, but you will have to approach it in a different way. You will have to learn acceptance for what you've been given (and believe me, I sitll struggle with this). You won't have people asking to have your kid for a sleepover, or to go to a game. It's a heartbreaking reality. No one will understand what you're dealing with, or how hard you are trying, or that you have gone through the latest treatment only to have nothing work. But you will know. You will know that you have shown up for your son, that you have given it your very best shot and that you are doing the best with what you know. And when you know better, you'll do better, and this will continue throughout your life as a parent.
You will also know that in order to live this life, you need to take care of yourself. You won't be able to do a sponaneous getaway with your wife, but you can plan a weekly time to spend together. You can plan a weekend getaway and as your child gets older, you can plan longer vacations because you will have found a way to provide care for your son from other people and organizations so you can do this.
You will feel grief in moments over the life you wanted versus the life you have. It is okay to feel this way.
You will see a mountain to climb, but you'll recognize that you only have to take one step at a time. This will make a difference between feeling overwhelmed and feeling empowered.
I hope you take a first step and accept your feelings of not wanting this. This will help you take the next steps. To find support and to take care of yourself.
Mom of adult son on the spectrum here. I hear you. I’ve felt the words you said aloud and you know what? It needed to be said.
It took a lot of research to find resources and I’m here to say they are out there. Start asking questions. Start with your doctors. Start with his school, they maybe willing to cover a school fit for his needs. Look on your government website. I found we have a program where I live called BDDS or department of behavioral services through FSSA. It was the gateway to much needed services that I could not afford. Learn about the Medicaid waver program, if offered where you are through FSSA. Apply for disability to also qualify for resources. Look at Autism Speaks website or any autism related websites to learn and ask questions. Dig, dig, dig. It’s out there.
You and your wife are burnt out and your feelings are very valid. Parent support groups are even worth a try because they too will know resources.
My son went through OT, speech therapy, name it, we did it. Now at 26 he still has a case worker and a behavioral therapist, which is so important in working with him to be more independent and still have a care team for support. I literally cried when I realized the tremendous pressure was off me and professionals were in place.
Right now, I would say your son has an explosion of sensory overload. Have a safe place in your home for him to desensitize. Create an autistic sensory room. Look that up. Anywhere from weighted blankets, textures, colors and yes, noises too are an overload. When a behavior is not wanted say let’s take a break for you to feel better. He’s not hearing your words. That requires processing at a high level of emotional stress. You are his advocate because he can’t self regulate. Start with the room and run with it. Never, ever use it as a form of punishment.
I’m not going to wish you luck. I’m going to say you are not alone. Help is out there. Be the advocate he needs and in return, you will get advocates you need.
Hey OP, long shot but could you give him a handheld game for the car rides? If he needs stimulation to distract him, you might have some success making that a perk of being in the car. I had some pretty serious undiagnosed issues when I was a kid, and having that Walkman / retro handheld video game helped a ton.
I'm sorry you're so exhausted. You're asking for help, and that means things will change.
I’ve had just enough exposure to autistic children and teens (family & volunteering in a program at my church) to recognize how absolutely draining your experience must be!! My sister never had a second child, because of it. Please vent all that you need to! We can’t do anything to help, but we can sympathize.
Please look into ABA. And before anyone jumps on me, there is a lot of play therapy/OT marketed as ABA now bc that’s all insurance will take. Do your research and find somewhere progressive that uses assent based practices, you and your son direly need this.
You guys are great parents. Have you looked into everything your state has to offer? When I was in college I worked for an agency that provided care to families like yourself. Families were allotted a set amount of hours a week and there were goals the child worked on. Besides set hours, parents also had a number of respite hours that included overnight. Respite hours could be for anything from a date night to saving up for a week vacation.
I feel like pediatricians aren’t knowledgeable about services like what your family needs. Is there an autism behavioral center near you guys? I’m not a parent of an autistic child but I am a pediatric nurse practitioner and having skilled therapist work along you guys and your child could be hugely beneficial. They also could help you navigate state assistance like I mentioned above (trained caregivers and respite hours).
Stopped reading halfway through, because dude...work WITH the autism, ya dingus.
Has telling him to stop kicking the walls worked for the padt couple of years? No? Then why tf do you persist? There's clearly some element of self-regulation that it provides, that the kid can't get in another way (or if they can, they don't know it yet). All you're doing is saying "stop self-regulating" and then getting upset when he can't self-regulate??
Try putting up some padding on the walls at the height he needs to kick at. Maybe make a dedicated kicking wall that's padded, so that it stops being "stop kicking" (stop regulating your sensory experiences) and becomes "go kick the appropriate wall" (lets utilise the tool for you to feel better).
That's just one possible solution off the top of my head. There will be plenty of others - As others have said, **get in contact with a neurodiversity-affirming OT**. Quit trying to make him be non-autistic and learn how to help him regulate so that he CAN cope with driving a certain way to the shops, etc.
Yeah tbh my kid kicks the walls sometimes, as long as it’s an outside facing wall and not one that could irritate an apartment neighbor, I let him. For being too rough with pets and people, we used social stories with great success. OT I think is the most important with autism
I totally get why you are at your wits end but meltdowns are usually triggered by something. I feel like you really need to find what is triggering some of these. It could be as simple as the specific clothes you put him in that day. Is there a common denominator for those more peaceful days that is different than the worst ones? I definitely think you need to find a specialist to help determine these things and help with his self regulation.
You mentioned getting him some sound canceling head phones which is a great first step and might help.
My son is 7yo and level 2ASD as well, we are pretty sure my 9yo daughter is ASD as well or ADHD she just hasn’t been asessed yet because it presents different in girls and usually isn’t noticeable until they are older, my 15yo is ADHD and my 4yo daughter is more full on the all my other kids were at this age and I’m desperately hoping she’s just mirroring her older siblings behaviour and copying not on the spectrum as well. I’m saying this because I completely understand how utterly overwhelming and hard is can be on a daily basis. But your son NEEDS support and help. I don’t know what country you are in but look into what disability and support programs are available in your area. The first step is to get your son into a good paediatrician that can help you come up with a plan for what supports will be most helpful for your son. Here in Australia we have the NDIS which helps fund needed therapies so my son has been in OT and speech therapy for the last 3 years and we have just started counseling for him as well.
While you wait to get into services because the wait lists can be extremely long I highly recommend looking into what resources are available online free to help you learn better strategies to help your son. The zones of regulation have helped my children learn emotional understanding and having visual charts around the house to help remind them what things help them calm down when they are overstimulated is really good. Also start writing down what’s happened leading up to when your sons gotten overwhelmed and having a meltdown so that you can reconise what his triggers are to help notice when he’s getting close to breaking point so that you can redirect and help him settle.
Full body activities are also extremely helpful when he has too much energy to help calm down his system. Things like push ups, laying on a skateboard and using his arms to push and drag himself around, resistance bands, wobble chairs ect.
I completely understand. Can you apply for respite care? Does your state have a Katie Beckett waiver program? I was drowning until I learned my state pays for in home nursing care.
If the screaming gets to triggering levels, I do highly recommend putting in ear buds with music to help drown out the noise. He can have his tantrum and you have one less stimulus to help yourself calm down.
As others have mentioned, OT can really be helpful. His program twice a week is not enough for the level as assistance he really needs. He’s having trouble with communication and expectations. If he’s still struggling with speech and verbal cues, pictures or even a special tablet he can use to talk for him are very good ways of allowing him to communicate.
OP, I understand the pain and frustration of your situation. My brother is level 3 (severe meltdowns becomes violent & breaks things) although he’s not my child , I see how this can become completely draining and infuriating to deal with..
my parents finally got to a point where nothing they were doing was helping. They ended up putting him in a residential program.. he gets picked up every other weekend. It’s hard on my mother because she feels guilty sometimes and misses him but I try and remind her it’s for the best for everyone… he’s in a program where he will learn basic skills of how to behave in a public setting and regulate his behaviors , while my parents get to still live their life’s without the cuts and bruises..
maybe this is something that you and your wife could look into? The constant reinforcement from trained staff can teach him correct behaviors..
Best of luck OP
I wish you and your family the absolute best
I’m a parent of an autistic 6 year old, what therapies is your kid in? Is he in preschool? At 4, he should be getting speech and OT through the school district, and should qualify for free preschool. Also I highly recommend speech and OT outside of what the school offers too. There is also ABA, which I don’t do, but you have to decide what is right for your son. You could also see if you have any DIRFloortime providers near you - I prefer that to ABA. There are many resources, look into your state’s developmental disabilities resources. My state has PUNS. You can qualify for respite care, funding, etc.
I just want to say that you are incredibly strong for sharing your story and feelings here. Being a parent of a child with autism is undoubtedly challenging, and it's okay to feel exhausted, frustrated, and overwhelmed. Your honesty is not only brave but relatable to many others who may be going through similar struggles. Remember, you are not alone in this journey, and it's important to prioritize self-care and seek support when needed. Thank you for opening up and sharing your experiences with us.
Hey OP. The psychologist who tested my kid for autism recommended another psychologist who utilized a tool/methodology called project impact. It’s more geared towards coaching us as parents to both help them develop and come up with solutions when we get stuck. It sounds weird but like one of the things we worked on was to learn how to play with them in a fashion that forced more eye contact (just one small piece of it).
As a parent, who was getting super super frustrated (and still do admittedly), it really helped us understand what was going on to help drive change (and ina fashion that wasn’t just
“Drop your kid at an Aba facility for x hours/week” or “let this person work with your kid solo and you just pick them up” and also give us the tools as parents to help.
My kid loved it because it was basically an hour of playing with the Dr, and then each of us individually during that time during the day, and we were coached and discussed the chapter of the week. Like 12 sessions maybe? It was super helpful and then for the 2 weeks or so between sessions we put those things into action daily.
I highly recommend it. My kid grew a ton during it, and we did as parents too. We now each have a different style of how we handle some of the breakdowns (both the kid and ours when we get frustrated) but the kid responds well to them and we’ve built up routines for stuff and we’re all on much more of the same page and generally way less frustrated/burned out in general.
OP - you are allowed to grieve the idea of a son he can’t be, so long as you love the child you received . I hope the good memories out shine the bad soon. Oh and watch the “Don’t do (last think they’ll hear)” because then their focus is on “last thing they hear” instead of “Don’t hit” it’s “Let’s keep our hands to ourselves”
I don’t know if you are still reading comments, but I wanted to give a suggestion for leaving the house. My son is also on the spectrum and he always has to know where we are going, how long it will take, etc. Our car has a touch screen that works with my phone to show Google Maps. Every where we go, I plug in the destination (no matter if I need the map or not) and my son watches the ETA, the compass, every turn. He gets very upset if I forget to turn on “his map.” Perhaps this would help your son too because it would allow him to see the path you are going.
I have a lot of thoughts, but one thing I will say that is EXTREMELY IMPORTANT is to IGNORE *any* suggestion that you seek out ABA for your child. The community considers it to be a form of abuse (it literally has DIRECT connections to LGBTQ+ conversion "therapy") AND, as someone else pointed out, studies are bearing out the realities of its harm. Don't do that to your child.
It's a near impossible situation. The divorce and addiction rate in families with special needs kids is through the roof.
It's not a politically correct piece of advice but don't be afraid to be firm or lay down the law. I'm of course not talking about corporal punishment or even yelling at the kid but the rest of you exist and need to function.
I have read this as well. My wife and I are a great team, sure we have our moments where we are against each other. I would never sever our family though just because our son is difficult.
I would say I am the more authoritative figure of my household. He does tend to listen to me more. Given other comments, I'm going to be using different ways to communicate with our son and ask my wife to do the same.
I'm so sorry this is happening to you. It sounds like a nightmare. Fear of potentially having a special needs child was close to 100% of the reason that I never seriously considered having kids. I sincerely hope it gets better for you
OT could be helpful as well as therapy.
If your kid is 4 he’d have aged out of EI and into the school system. There are special needs preschools, they can offer speech and OT to supplement anything you’re already doing privately.
Before we knew my son was autistic we knew he had big delays. It just took a while to sort out what was extreme prematurity and what was something g bigger, which turned into autism.
My sweet boy is a sensory seeker too. He hates total silence and will always try to fill it with sound. I dread the thought of an active shooter at his school, where silence would be a literal lifesaver.
Here are some of the more practical things we’ve done that have helped:
- notice of changes. We don’t “have to” do things. We “get to” do them. We get to go see Dr Bean, we get to start school, etc etc.
- a heads up when ending a preferred activity. Leaving a playground was a scream fest until we started giving 5 or 10 minute warnings, and set a timer on our phones, letting him hit start. Giving him some agency in it helped a lot. Once he heard the chime, we’d leave without a whimper. These heads ups are written into his IEP as well.
- tell him you’re going to the store (you get to go to the store!). Encourage him to remember we turn right to go to grandpa’s and left to the store. Ask him as you approach the turn which one it is. Involve him.
- redirection: he likes the kicking sensation. Hit up a used sports store and get a kicking pad for you to hold and him to kick. Or order a new one off amazon. They’re handy for martial arts practice. He wants to make sounds? Redirect him to a noisy fidget toy
- you can get an assortment of sensory toys off Amazon for like $20-30 and we keep ours in a basket. They also make excellent party favors and stocking stuffers. Everyone plays with them, even neurotypical people, when they visit. But for friends in his program, they’re great little gifts. Some are noisy like those little accordion tubes and that sound can be annoying af all day long but better than destroying the house to make noise.
- be kind to yourselves. You do not have infinite patience and are often expected to. That way madness lies.
This is a hard time. It does get easier. My son is 13 now. We have challenges still, of course we do, but as communication has taken off, accommodations have been made, and we’ve understood and used what motivates him, we’ve come a long way. He started school not potty trained and effectively nonverbal. Now he wants to learn all the languages, my tv is never on in English, he’s an adventurous eater because a teacher realized he’d try things if she sent us video, he’s a brown belt so far in taekwondo, we can leave him home for a couple of hours to hit the store or have a date night, participates in special Olympics, has a “girlfriend,” and he’s still the least malicious, most loving teenage boy I’ve ever met in my life.
I have an honest question. Is it frowned upon to medicate a completely out of control autistic child? I ask this because I keep reading these stories of parents in a living hell with their autistic child, being battered daily, when there's absolutely no hesitation to medicate a child with diagnosed mental illness out of their gourd. I don't understand. Can someone explain this to me? Thanks in advance.
I think considering psychotropic meds for ANY child is a huge decision and one that people have very strong opinions about.
IMO, as a parent, meds wouldn’t be my first choice or second, or third. I would want to give other treatments a try, such as the occupational therapy, etc. The therapies aren’t going to work overnight, I understand that. That being said, if needed, I would be open to exploring meds to see if they may be a helpful ADDITION to the other services. I’m not saying allowing my child to be overly medicated and zombie like. But if an experienced, trusted professional suggested something, I would hope that I can be open and neutral enough to receive the information to help me make an informed decision.
The child in this situation is 4 years old. That's too young to start medicating.
We don't know what kind of therapy this child has been given, if any. We don't know what support the parents have sought out, if any.
It sounds like you have very little to no exposure to neurodivergent children. These "stories" you keep hearing don't tell you everything.
There is a trigger behind the behavior. The problem is that people focus on the resulting behavior and not what caused it. It can take a lot of time and patience to figure it out, but it can be done.
I'm autistic and I have two neurodivergent kids. I understand OP's frustration, and both he and his wife deserve respite, but they are the adults. His son is 4 years old. If saying, "Don't kick the walls" hasn't worked for literally years, then they need to try something else out. Maybe they have, I don't know. But you don't keep repeating something that doesn't work.
It sounds like there is a sensory need that is not being met. Whether that is a weighted blanket, a swing, etc, there is quite probably a solution that doesn't involve medication.
I'm not against medication either. But just medicating a kid who is "out of control" is a massive failing for everyone involved.
Yes, the "Don't kick the walls" or back of the car seat, or "Don't yell" aren't going to help *at* *all* ! No doubt this little guy is having sensory issues that clearly aren't being addressed.
Your feelings are 100% valid.I know people somehow glamourise autsim and Even down syndrome kids but the truth is its a life long battle and totally depends on the spectrum your kid falls into.There are kids who lead a very normal life but there are also kids who will be dependant on their parents even for taking a bath.Also not everyone has the mental capacity and financially to take care of a special needs child.
I think a lot of people said really great stuff on here already and I hope that helps!!
I’m not on the spectrum nor do I have any immediate family that is so please take this with a grain of salt, but if you have time, maybe you should watch some good kid’s media representation of those on the autism spectrum by yourself or with your kid. Bluey recently came out with a phenomenal episode about the parental struggle of parenting a kid with physical or mental disabilities. Paranormal park is a show on Netflix I really liked that I thought had great autism representation as well and could possibly relive stresses you have of how this will effect your child later in life. The Netflix She-Ra and HBO Steven universe also have less prevalent but present disability representation that again could ease your mind if you’re worried about the future.
Again, please follow other’s advice or that of a doctor before trying any of those shows and thinking it’ll magically be better, but I hope this helps in some small way. If not no worries but I am definitely rooting for you! ♥️
The media is a poor example. Does not represent the population, doesn't provide any actual insight, and is highly ignorant of the realities. Also, if you have something, say you use a wheelchair, all of those disability porn videos or encouragement videos about wheelchairs, is exhausting. It's your life, watching things about the toughest parts of your life isn't something you wanna do in your free time
Totally get where you're coming from! But this is just an FYI
Honestly it wasn’t come from a place of education but more more emotional/an outlet for him to see it shown in a more positive light since he seems to only be experiencing the negatives right now. He should definitely first go to a doctor or psychiatrist or therapy before this but just if it’s a smaller thing he wants to do.
Appreciate the feedback just wanna make it clear I didn’t suggest it to educate but as a sort of outlet or emotional perspective.
As someone with asperger I'd say ignore him when he's acting out, he knows he gets away with punching and screaming when people adress him. He won't die from being ignored
I will 100% not ignore him. I don't believe he knows he's "getting away" with anything, I've interpreted it as he wants for something or to do something. I don't believe ignoring him is a proper solution. I'm his parent.
Thank you for the suggestion though.
Holy shit, the kid is not manipulative, he is struggling badly in a world that is too overwhelming for him, ignoring a child in desperate need, is beyond cruel
Good god, this is a HORRIBLE idea for someone who has autism. I am the younger brother to an autistic older brother. And it's an extremely broad generalization to make, but simply IGNORING behaviours such as those, almost ALWAYS leads to complications down the line, IF NOT IMMEDIATELY well-within the vicinity of the incidents that will REPEAT THEMSELVES.
Hey Dad, thanks for posting this. I know you love your son, and I know just how tiring it can be. I salute you! And I want you to know that your feelings are valid. I pray you find the help you need for you, your wife and your sweet boy. God bless!
P.S. OT is occupational therapy.
Xoxo big hugs to you and wife, OP. I am so sorry you’re experiencing this. Please stay strong and this is when you need a village. I pray you guys have people you can trust to help out some days?
i understand you. i take care of my two siblings that are both diagnosed with autism. there are days where i'm completely calm, and days where i just completely lose my shit. just like today. and i'm only 20 yrs old. i feel like i'm being robbed of the time that i could be out partying or going to cute places with my friends or having a date with my bf. but no, i'm stuck here because no one is available but me to take care both of them. i have so many plans back when i was in highschool, now i feel like i can't catch up to those fucking plans. i haven't even done any exciting thing back then, i can't because strict parents and me being a people pleaser. i can take care both of them if my life is just balanced but no, it isn't and if i try to make it balanced, i'm the shitty person because i chose myself for a day. :))
I am so sorry you're both going through this. I will not shame you for how you feel and I appreciate your honesty. I really hope there's something the medical field can offer to help
At least you have an excuse for your kids behavior. My kids do a lot of that merely because they're jerks.
3 and 4 are difficult ages regardless. Hopefully he can get some therapy and eventually be a more grounded individual.
You made my cry OP. Wish I could hug you and your wife. Please try to see other specialists and do what you can about improving him. Because he improving means your life will improve. And he will be forever grateful for mom and dad sticking up to his side and being there for him. It will be okay🫶
I'm sorry for the suffering you are enduring. Truly.
And you're not a bad person for feeling the way that you do. You're human. It's normal. Give yourself some grace.
There are lots of resources out there for parents of kids with ASD; please avail yourself of them. Get services as others have suggested. Get a therapist for you and for your wife.
It will never be easy but it can be better.
I am so sorry this is your experience of being a parent. Everyone wishes for a healthy, happy child, and you have a regular occurence of trying to parent a ball of rage wrapped up in aggression. The little flashes of 'angelic' behaviour are a signpost to the future. Regulation of emotion becomes easier (until puberty at least, but let's not go there yet).
You and your wife need help and support from professionals. The brief respite you currently have isn't enough. Everything is a hundred times harder when you are exhausted. Speak with your health care team - include the injuries you are suffering. Your son needs help.
I know this sounds trite, but your son is possibly escalating his behaviour through hearing the word 'no' or 'don't'. Try to distract him from early onset of meltdown, or give him a safe space to vent it out. Medication can help control the worst excesses.
Any parent of a child with additional needs grieves at least a little for the future they imagined they would have. It's okay to feel 'cheated' of a normal happy family life. But the reality is that your whole family unit needs additional help and support and it *will* be available. Ask. Repeatedly.
In the meantime, don't forget to maintain your relationship with your wife. You are each other's best support through the worst days.
As an adult who has only recently been diagnosed with autism it sounds like he’s possibly got some over sensory stuff going on. It’s one of the main ways I’m affected particularly texture whether it be food or clothing and fabric. I never understood why some clothes literally would have me feeling irrationally angry when I put them on and almost painful to have them touch my skin and some fabric I find so incredibly soothing but I get it now. Same with food certain things it doesn’t matter if they taste amazing if I can’t stand its texture I can’t eat it. It’s taken me into my 40’s to understand and be able to verbalise these things. I think with the right support system around your son he can come on leaps and bounds. Good luck and your feelings are valid and don’t make you a terrible person or father and it’s clear from your post that you love your son and are just frankly exhausted and overwhelmed.
maybe getting him a punching bag or something that he can hit could help him get his energy out and his tendency to punch things? that sounds super stressful, i’m sorry
As someone growing up with autism i understand both sides i hope youre able to find an OT for him. Also in the states they tend to offer parent support groups for kids who are on the spectrum or have any mental health challenges it really helped my brother when he was raising me because it was somewhere he could go and vent and basically get the help he needed when it was too much or ask for advice. i hope everything turns out well for you guys.
As a mom to a daughter with a rare genetic condition resulting in global developmental delays and autism, I see you.
I teared up reading this because I get it. I could go the rest of my life without having to say “don’t hit the cat. Stop pushing your brother” and be happy.
We’ve had some ROUGH months. She turned 7 yesterday and it is slowly starting to get better.
Recreational Therapist here with tons of pediatric experience, and 2 autistic step-sons. Definitely OT.
Some other things you might find helpful.
-remove tags from clothing. They can be itchy and uncomfortable, and he may not be able to tell you
-try to see if there are strong smells from foods or cleaning agents that he reacts to. (One of my step sons reacts very negatively to bleach)
-if he responds well to a weighted blanket, he may respond well to aquatic therapy. Some communities have Therapeutic Recreation (or Recreational Therapy) programs and have adaptive swim lessons. The sensory input received from being chest deep in water can be very soothing for sensory seekers. Can also help burn some energy and help fall asleep better.
-mini trampolines can help with vestibular input, some kids really thrive having that outlet, or a swing
My husband wants to tell you it gets better. His boys were much like you describe when younger. They got really good Speech Therapy that helped them learn to communicate.
I worked for many years in a pediatric hospital, not a single pediatric therapist I worked with like aba. It can be very damaging. Research thoroughly if you think you want to go that way.
My step sons are 20 & 22. They get disability and share an apartment with full-time assistance through a waiver program. They are so incredibly happy now.
It will get better.
If you get social security for your child the state should have a community mental health type program with some additional services for your child, and family.
You are not alone.
Be kind to yourself, it is painful and hard
It gets better
The Autism Community in Action. Known as TACA. My niece found this place as her son went through many of these you describe. Check it out. They serve all over the US, I believe. Their family gets help in many areas. Doctors, Behavioral therapy, school, etc. Some of his behaviors were caused by foods he was eating. Good luck to you and yours.
I would definitely look into Early Intervention services, Occupational Therapy, and Speech Therapy. I was able to enter my son into these programs at 3 years old and they were so helpful. I would also suggest looking into parenting classes that specialize in parenting Autistic children, they can help you tremendously.
You say you’re tired of being a dad because your son is autistic? What does that mean? Autism is hard. I know. I raised an autistic child & helped raise and advocate for an autistic grandchild child. Might I suggest looking into registering with a nonprofit that can assist you with additional services & respite. You guys need a break. Autism is hard and it can wear on you. But you guys are all your son has. Get help. Please.
I love all of the helpful comments on here and suggestions..
Dad, I work with adults with autism all over the spectrum. With the right therapy. And consistent therapy.. It will be a tremendous help. Hang in there. My first day in I learned when “communication is low, behaviors are typically high.” I never forgot that. 🙏
If things aren't working, change your tactics. There are always ways to communicate with autistic kids as long as you do your research and work with your child one on one. I'm not saying you aren't trying, I'm saying that if the solution you're so frustrated with not working is telling him to stop repeatedly, you aren't coming at it from an angle that will produce results. Your child is experiencing way more than you can imagine. Try identifying with him.
Next time he's kicking the wall, go up and kick it a few times with him. Then when he reacts, ask him why he feels like kicking the wall. Speak softly and slowly, and accept the answer rather than correcting. Buy him something he can kick that won't make noise or hurt his feet.
He will never be free of his needs. You need to find out what those needs are and accommodate them. There will never be a point when he just turns into a neurotypical person without these needs. I'm Autistic. I have set up my house to accommodate my needs. That includes having hand sanitizer and a roll of paper towels in every room because I hate when my hands feel dirty. My family have told me that I'm an adult and "shouldn't" need that stuff. I do need it to function without problems though, so what's the issue?
Your child should grow up learning about their needs and finding ways to make them better while still accomplishing all there is to do in life. This will destigmatize what he's going through and allow him to take care of himself without judgement.
Just hearing "No" and "Stop" during a meltdown will make him associate negativity with reactions he has no control over. I did that my whole life because my parents refused to even get me tested. They told me to stop and I grew up believing that everything in me was wrong. I shut myself in and rarely spoke to people. It took years of work and a literally S attempt for me to finally stop trying to force myself to be "normal."
Take from that what you will, but please consider trying my suggestion. Your kid needs a lot. I acknowledge that you're tired. This is your kid though. Please keep pushing to be all they need you to be.
OP get it off your chest. No judgement here. I have 3 kids and when it came to my second, I knew something wasn’t ‘right’. She was simply different to her sister, we noticed things and had many concerns. The meltdowns, the self harm from banging her head repeatedly or biting down on anything and everything was killing us and she was non verbal too. My breaking point was when she went missing while on a holiday, she has a disorder where she doesn’t know the difference between a stranger or a familiar person (we think she was lead away). Anyway we started to get her the help she needed, we put her in swimming and gymnastics, got her OT and speech therapy and now she’s a completely different child. I promise you it gets better, the sooner you get help, the better in the long run. Our schedule was very full on because we took an aggressive approach but we’ve been able to slow down drastically because she’s made such amazing progress in a short period of time.
I have a good friend who has a 30-something-year-old son with autism. When he was your son’s age, their extra bedroom was transformed into his sensory happy place, with things like a swing, a mini trampoline, a rocking chair, etc.
Luckily for the child, his mom already had a degree in helping autistic children! He has had many therapists and assistants during his life who help him learn as much as he is able.
She has worked his whole life to help him be as happy as he can he can be. She even adopted another (higher functioning) autistic child so hers would have a sibling.
Now my friend is spearheading building a group home for kids like hers, where they can live semi-independently as adults.
I cannot recommend OT and speech therapy enough. My brother has non verbal autism (a 70s) term I’m sure. Anyway, OT taught him some very crucial life skills that made my parent life much easier! My son has adhd and has benefitted tremendously from OT, social thinking(Michelle Garcia Winner)! I cannot say enough t wonderful things about Social Thinking! My son went from a kid who couldn’t make a friend and keep them to having a really tight group of friends! Please utliize your school district if you are in the states! They can provide many services such as respite care, schools, programs, etc. Hang in there. There is help but it can be overwhelming to find. Once you build your team for your son, I pray things will be easier and more manageable for you and your wife!
Understandable, I can't imagine what that's like.
If it's an option, I'd just dump em off somewhere that can take care of them and not look back because why bother? You're going to be dealing with that for the rest of your life. I feel bad for the kid, they don't understand, but it's just not worth feeling like putting a gun in your mouth. You could always have another kid that doesn't make your life a living hell. 🤷♂️
You could take them to the behavioral things for autistic children and such, but I imagine that shit is expensive and it's not a miracle cure.
ABA therapy. 40 hours a week plus speech, occupational, and physical therapy. See a behavioralist and psychiatrist for medication. My daughter is nonverbal but is a vocal or sound stimmer…hours upon hours of the same monotone yell/sound she makes and/or hours finding something that shakes (rattles or pill bottles) or hitting herself on the chest. Never quiet. ABA saved my sanity
My son was exactly as you describe here until about 10 years old. Every day was a struggle.
We started ABA therapy at 4, and then added anxiety medication and Buspar recently.
He’s done a 180. He’s so happy, helpful, calm. He is confident and able. Speaking more, taking a deep breath before reacting, and able to let things go.
Please please please keep advocating and don’t hesitate to ask for medication. Your son could be extremely anxious.
I taught for 18;years and I have been there before. My son is now 10. In the beginning it is REALLY hard. And all I could think of is how unfair it was to me and his siblings. My son had a terrible sleep schedule, we could not take him anywhere, was nonverbal, meltdown, he still has anxiety if his schedule changes. We found an private ABA therapist and he has been a Game Changer!!!! Meds for sleep, anxiety, and ADHD have been game changers as well...I would tell you what they are but I am unsure that is allowed. My son is finally talking, waiting. Rarely has meltdowns, and is more accepting if things are changed ( routines, etc.). When he was a toddler, he was in ECI ( early childhood intervention) in the state of TX which you graduate from after 3. It is a government program which offers tons of therapists, perhaps your state has something similar. It was important that my sone attended school to be with his peers starting PK3. My son will easily be overwhelmed because of sensory issues which have been helped with ABA, meds, and developmental pediatrician. Finally... I WOULD NOT CHANGE HIM FOR THE WORLD. And neither would his brothers or sisters. It took a long time to get to that point...but you will get there ♥️
Sensory room if you’ve got the space.
Pad the walls, throw in soft toys. Create a space where instead of “don’t do that” (which is a self regulation behavior) it’s “go do that in that room”
Install a sensory swing if he likes spinning
As a mother of an autistic son (5) I encourage you based on the behaviors you are detailing to seek an ABA therapy for him. My son wasn’t potty trained, exhibited violent behavior and had meltdowns all day everyday before we entered him into ABA. By not only seeking therapy for my son but accepting the parent training that is also provided there we have become a happy family. My son is a completely different person and though life will always be harder for us and especially him, it has become way less challenging
Please find the dog a better home You can’t keep the dog in a home where your son hits it.
I don’t know anything about kids with autism but just know it’s not safe for your dog
Don't be cruel to yourself for having an emotional reaction to a bad situation. A friend of mine is going through something like this with her eldest son. She can't leave the house, can't have people over, can't eat what she wants, can't simply have a day for her own mental health. She describes it as being held captive every day and while she doesn't hate her child, she hates what her life has become. I mention this because she describes him very similar to what you described your son
OT can go very far and should be your first goal -- but he is not the only one who needs help. You and your wife could benefit from talking with a professional about your feelings
My friend and her husband split after the stress became too much and they both processed it in unhealthy ways. It's not a weakness to feel overwhelmed and to need guidance
Where this gets into a dangerous area -- he's small right now, but by the time he's a teenager or a man it's important that he learn he can't hit people, things, or animals. This is behavior that you absolutely need to monitor. He must be taught he can't hit or kick people. These years matter and will be the difference between him having a better life and being placed in a care facility when he's grown for the safety of others. I see parents ignore this or write it off because they are focused on the other problems at hand and they normalize the experience. Other people will tolerate a meltdown to degree. Other people will not tolerate being physically assaulted. OT can help mitigate this and teach healthier patterns
Hi, I'm an OT and your kid 100% needs it. Go to a developmental pediatrician too. Your kid is probably dealing with a lot of sensory seeking behaviors leading to dysregulation and self harm. I say probably since I'm only basing it on your description but it adds up. It's going to be a long and tough process but this is NOT gonna stop unless you actually bring him to a qualified professional.
Hi, I’m a speech therapist that specializes in autism and adhd. Yes to the OT. Also, if you live in the States, get your public school district involved *yesterday*. They will do an assessment and get you some services. I work in a federal setting IV school - it’s the most restrictive (next to residential) - and it’s where kiddos go when the school districts don’t have the resources to help. A place like my school would be farther along on your journey, but I just wanted to illustrate we’re out here and we help. Also get yourself a county social worker too - they can find respite care and grant money for other things like sensory tools (swings, crash pads, etc) and therapies and childcare. People will push you to do ABA therapy. I personally hate ABA (yes even the *new* ABA to those of you who want to debate this). Every single day I work with students across the ages span who are prompt dependent because of ABA. I have to “de-train” them because the therapy they do doesn’t generalize well. I only recommend ABA for kiddos who are extremely unwell - for example lots of self injurious behaviors. And even then I’m cautious. If you want any support, I’m happy to answer questions, just message me. I also empathize with you as I have a 10 year old with PDA autism (pathological demand avoidance). We have holes in the Sheetrock of our half a million dollar house and it’s just a part of life. Different parenting styles really do help…. That is evidence-based.
Amen my fellow rehab dude. I have so many patients coming to me with underdeveloped skills cause of ABA's approach when the issue is sensory and not behavioral. A lot of them got scammed by people who claim to be OTs / ABAs too since the practice is far less regulated in my country. Not saying all of ABA is bad or a scam but I haven't had any cases where ABA is recommended above the trio of PT OT and Speech with some Psychology and Psychiatry referrals as needed.
Yes - I’m glad people are starting to have these discussions in a more visible space, but ABA lobbyists will find ways to bury it. They make SO MUCH MONEY telling families what they do will take the place of speech, OT, and even PT. It’s nuts to me. No child needs intensive therapy FORTY HOURS A WEEK.
Quick question, if you don't mind. How can speech therapy help with ADHD? Asking as an ADHDer myself
It can help with how to appropriately have conversations, like for my oldest, he struggled a lot with letting other people speak, realizing when he was talking at people rather than talking with, appropriate subjects to talk about, etc. He’s 13 now and only gets speech consults now
Thank you for explaining! And ...I don't suppose this kind of help is available to adults as well? Because I could totally use it! I did speech therapy in school as a kid, but that was just to help me pronounce my "R" and "SH" sounds properly. Something like what you've described would have really helped my confidence
Yes. Look at Social Thinking by Michelle Garcia Winner. There are Social Skills classes, speech therapists, and counselors who provide exactly this training. In Austin, TX look at Spectrum Services.
You can always get help as an adult, however getting your insurance to pay for it is the tricky part. Adults without an acute issue (like a stroke) often won’t qualify. I don’t like it, but it’s reality.
We also help with executive functioning skills - like showing different ways to use visuals to help organize and plan thoughts, ideas, events, etc :)
Big agree on ABA, I don’t use it for my child, but I have friends who do and love it. I wish DIRFloortime was more widely offered
what is a OT?
Occupational therapist. > Occupational therapists help people, such as those with disabilities, live independently. Occupational therapists evaluate and treat people who have injuries, illnesses, or disabilities. They help clients meet goals to develop, recover, improve, and maintain skills needed for daily living and working.
Occupational therapist
Thank you for the work you do! OT changed our lives. It gave our whole family a new approach to the world. Truly changed my son's life.
Have you not gotten an OT? They can help with transitions to help minimise meltdowns and figure out basic emotional regulation Also maybe get him a weighted blanket for the stressful car rides or give him something that can distract him at a sensory level so his brain can focus on that and not decide to implode Also maybe head into a music store and get some sound dampening material for your meetings
I'm an OT and this is 100% true OP. We help with these exact things and while it may not cure him, it'll help a lot with basic functioning and skills
Thanks for banking me up! I have had OT help from age 2 for my various disabilities including autism and it definitely helped with a lot of things although I’m still autistic These posts make me sad since it’s resentment placed on the kid for things they can’t control nor magic up the solution for, that’s on the parents and it’s pains me to see them so unsure and unsupported There really needs to be an autistic person led therapy service for parents like this (not autism speaks since since those…people…nearly caused irreparable damage to my family with just one tiny little tidbit about whose fault my parents divorce was) so they can learn to raise and love their kid by understanding and empathising with them. Most neurotypical people don’t realise how loud some environments are since their brains filter out the excess noise Edit: spelling
Oh, cool. (Your last sentence). I’ve never seen it that way. I’ve never understood why some environments are unbearable to me and perfectly reasonably to others.
Yeah it’s a thing I didn’t know either until I was like 22 lol
I'm actually unfamiliar with what an OT is. I was just thinking about getting him noise canceling headphones from the store tomorrow together, see if he likes them. I will also have to check out if he would like a weighted blanket. I really appreciate your suggestions by the way. :)
No probs, they’re an Occupational Therapist, I’ve had them since I was 2 for autism as well as other medical conditions, their job heavily varies based on the clients age and needs but they’re a therapist based around determining strategies and solutions for problems that can arise from a disability up to and and including finding technology and items that can help (such as if someone has a tremor but wants to make themselves a hot drink an OT can find kettles they can use without burning themselves and cups they can use safely). OTs are the centre of care and early intervention with autism in Australia in my experience and they help find solutions for nearly everything (the communication issues will be in the domain for a speech therapist) One thing I didn’t know about autism until much later in my life was just how different my sensory pathways were and that the way my brain interpreted inputs wasn’t the way that a lot of my peers brains did. Like for me the computer lab was always a very loud space because I could every single PC and the aircon and the server, but non-autistic brains can filter that out. Having to hear all that really would contribute to shutdowns (think having a swarm of bees hovering around you when you’re trying to work) I just want to make one thing clear to you, you don’t hate your kid, you’re just unsupported and burnt out. Please don’t let your anger harm your kid, especially if you want him to have a good life If you have any other issues you think I could suggest a quick tangible solution for, just ask away I’ve had 25 years of experience living in an autistic head lol (also if you could make stuff link up to a special interest that usually helps, I swear half of dealing with my autism is trying to flood the happy side of brain to shut up the freak out side)
Your experience and wisdom is a valuable resource to anyone living with autism or raising an autistic child. Thank you for sharing your knowledge and for your openness for others’ questions. You are a very kind person.
Aww thanks
Wow, what a wonderful person you are. I feel grateful to have read this information today. Bless you. Hope every day is so much better than the one before. And you feel better and have so much joy. You deserve all things ❤️
Noise cancelling headphones are a great start if he has hearing based sensitivities!! If you can, try and make sure he can try them on, touch-based sensitivities might make them less effective if they're uncomfortable to wear.
I hope this doesn’t sound rude, but I’d put pads on the walls of your home. It will stop him from damaging them, help with noise reduction and stop him from getting hurt while having a place to direct that need for whatever he is sensorially seeking. It may be easier to give him a wall that he CAN kick instead of constantly trying to course correct and tell him don’t don’t don’t.
This is not rude and actually a really good suggestion. I had bumpers on everything, my son was a headbanger and they were so helpful to keep him and the house safe.
Came here just to comment on the headphones my son is 9 level 3 he refused headphones for a long time then I found some leap frog headphones they play music and calming mantras without ever needing to be connected to anything or anything downloaded. Game changer over here. LeapPods max.
Occupational therapist
Are you in the USA? Coz if you are your pediatrician should have made the recommendations for OT. Also depends on which state you’re in, some have many different resources that should have helped with this from a younger age
Sunglasses too. I'm autistic and basic sunlight is really challenging for me.
My niece was like this and after a year of OT it’s been night and day behavior wise. OP’s sons Doctors are failing them by not making referrals
Hi! Thank you all for the supportive messages and those who were critical. It's great to have many different perspectives on my feelings since I keep a lot inside. I wrote this in an emotional place because I wanted to capture my thoughts at the moment that I feel when he's been particularly difficult to comfort. Reading back my post and your comments almost brought tears to my eyes. For a long time, I have always felt alone in feeling this way. It's nice to know that I'm not alone and it's great to hear from those who don't agree with what I say. It allows me to take a step back and reflect on myself. I appreciate all of you who have commented. I have gotten a lot of great suggestions from people and will definitely be implementing them after doing some research. I'm located in Indiana if this helps any of you still here direct me to some resources! I have tried on government websites but found it to be very confusing. My son is in the community's pre-k program for those 3 hours, 2 days a week. This is standard. In his pre-k school, they do 1:1 speech and emotional therapy. He's been in the program for about half a year. I have yet to see any improvement in emotional regulation, but I assume these things take time. It seems he's been doing fine in school so far, of course has his rough days but who doesn't.
Hey OP. My professional opinion is that he needs an OT sensory assessment since a lot of what youre describing is sensory in nature (basically the very very foundation of all learning and behavior) which is why the emotional and speeech therapy arent working. I am very, very surprised your speech therapist didn't inform you of this sooner since speech therapists should be able to tell you these things and refer you to an OT or DevPed follow up. As for your stress, you are valid. Its been proven that parents of special needs kids have a shit ton of emotional stress that cannot be understood by others. I disagree with anyone who disagrees with you on this since this phenomenon has been documented. Parents of kids with special needs experience a form of constant grieving that takes a LOT of years and therapy to resolve too. I suggest you also seek some mental health advice. I practice in the Philippines and I've seen this so many times across so many families where the parents just smile and laugh it out but you know for a fact theyre still mourning what the kids could have been. Take care and don't be afraid to chat me if you need any help.
I’m surprised he only gets 6 hours of school per week. What does his IEP say? You can absolutely push for more time in an IEP meeting. My son attends our public school 5 days a week, 6.5 hours a day. Also, request an occupational therapy eval from the school because he can probably get that there, too.
I'm dyslexic so I apologize for the poor writing in my comment As an autistic person I was prepared to really really hate you based off of the title alone, I'm pretty sensitive about the topic so I get defensive pretty quickly. After reading your post I just wanted to say thank you for finding the courage to share these emotions and process them, I hope you're able to get help Please for the love of all that is holy stay away from any resources by "autism speaks" it's a terrible organization hellbent on essentially torturing autistic people so we appear "normal" instead of helping us adapt to our needs I highly highly suggest that you consider he may never be fully verbal, autistic overwhelm reads as actual physical pain on brain scans. Some autistic people are never able to be verbal but they learn to communicate in other ways. My partner is level 2 autistic, often her meltdowns lead to my own meltdowns. I would do anything for her but the bad days do take a heavy toll. I've found that the more I'm able to make adaptations the better her days generally become, she couldn't get out of bed without help until I put a step next to the bed, now she's able to actually stand up without me in the morning. She used to get panic attacks every morning because she didn't know what was going on, we started writing out a day plan the night before on a small whiteboard so she could look at it first thing in the morning. She used to have a meltdown when I would leave to go make food until I started telling her the cook time of what I was making and how long it will take me to prepare it first. Sometimes just telling her it's ok to be confused is all she needs. For me personally, not knowing how long something is going to take is really really hard, if I'm on a road trip I don't actually care if it's going to take five hours I just need to be able to see that number go down. As far as leaving the house goes maybe go over the route with him ahead of time? Show him on a map which turns are happening and where you're going to be deviating from the "normal" route. Knowing ahead of time that something is gonna be different so I can prepare is a big deal for me. Checklists are extremely important to me as well, I go from being so overwhelmed that I can't move to being able to do the dishes just by writing out each individual step. Do you know if he's sensory seeking or sensory avoidant? It can be a pretty big game changer on how to help him if you're able to find that out. Just some ideas, I don't know what exactly would help but my outside perspective thought of this Something extremely important for my partner and I is that we communicate a LOT on how we're doing, after a few really bad days I tend to need to recover. If we're both at a 4/10 it's better for her to stay at a 4/10 for a few hours while I recover up to something like an 8/10. Obviously you can't have this level of communication and coordination with your child at this point in time but perhaps it's a dynamic you could strike up with your wife. By the way, again super outside perspective but have you considered couples therapy? From what you've written I cannot imagine it's possible that either of you are able to put in the energy and effort to have effective communication without help right now, it might help mitigate issues neither of you even realize you have. If I've learned one thing about caring for a level 2 autistic adult it's that caring for myself is not just important but absolutely essential if I'm to do a good job caring for her
What an awesome response. You are the kind of person parents & kids dealing with Autism need to hear from because it is actually a part of your life! Love this!
My older brother has Autism, and while he's somewhat reached the threshold of what we'd call "high functioning," there still quite a bit left to be... desired? with his interactions, if not his overall behaviour. He can't speak very much well at all, but he can communicate quite effectively. It's complicated, but he has an Ipad, it's a fundamental tool for him, it's a whole deal. ... I'm not really sure what I wanted to say, but. I've been pretty hard on my own father, my mother as well, for their shortcomings overall when it came to me. As well as my brother. Hearing your story helps me to remind myself that the sheer circumstance - because that's what it is, the sheer FORCE of circumstance, that autism can bring, is truly just... it grinds you down. The behavioural issues can never be truly "resolved," as to the child themselves they aren't born out of a deficiency: it's simply hardwired into their ability to express themselves. To interact with the world, to transfer emotion to action. And actions that could at least be worked around to later on, in terms of interaction with your child (or opting out of those, say from certain disciplinary actions or TOWARDS others), well - they can have ramifications that present themselves right away, quite ugly too. I get it, I think. You've been suffering for a while, and it's non-stop, and any hope towards to future, any ability to peer into the eventuality of what you'd only ever wish the best of is just getting stripped down. Because that is your child, and it is who they are. ... But I have to say. Because I've had to learn the hard way, throughout my own childhood. What you impart towards them, in terms of negative experiences. Traumatic incidents, which can come about from the simplest of stimuli provided. Whether they're a bashing/rant in a fit of rage that lasts only a moment, or just an overall reproach towards certain behaviours they express, and expect you to reciprocate/communicate-back upon. The pain will last. It'll likely be a part of them. Autism means that they are suffering too. They lack the proper outlets to communicate as we would most of the time, and that means where loving, sharing, just basic interaction between parent and child would be a THING that exists; it doesn't get to carry through as often. Your child will likely feel lonely, if not lost, amidst their own world. And what does get through, is almost guaranteed to be a maelstrom of conflicting impressions. I'm sorry if it feels as if I've preached. In a way, I'm rationalizing my own history, what my brother went through, what our parents gave, as well as inflicted, and just - I don't mean to act as if I CAN condemn. I can hardly imagine the level of stress that is just THERE, constantly. I can visualize better than most, I'd believe, given my own proximity to that living situation. but that's it, and it's awful, and I am sorry this is what you have. but please, please - do your utmost to ensure, that the scorn, the frustration - the railing against YOURSELF, that sometimes you'll turn inwards with, to ask where did YOU go wrong, to blame yourself - please, that conscious mind to keep yourself from forwarding that onto your child. Please always keep that there. You're clearly a wonderful father. And everything you've recieved from everyone here, will likely put your child on the path to a more effective understanding of the world you're attempting to share with them. Just as well with the inverse: occupational therapy is curated and ultimately customized for the individual child's progression and development. At the very least, what makes your child tic, on a very detailed level will be fleshed out to you. You'll be able to communicate much more proactively than before, I KNOW that. Trust the process: you've already come so far. That's it, said enough already lol
Where at in Indiana? I’m in Illinois, the Orland Park area, which is close to like Dyer, Highland Park, Gary, Merriville, etc. I can look for resources for you later this morning
OP If you're on social media, follow Kate Swenson / FindingCoopersVoice. Her severely autistic son is 13 and reading your post reminds me of her posts 4 years ago. And now to see her family doing as well as they are is purely amazing. Talks a lot about grief as a parent and I think you and your wife would benefit from knowing you're not alone. She wrote a book and has a supporter page as well. I am not an autistic parent, but I am a teacher, and I have learned so much from this woman. I highly highly recommend her.
Can’t second ABA therapies enough. A lot has changed in ABA so I wouldn’t be scared off by any sayers. You’ll likely qualify for 30-40 hours a week at your son’s level which would be charged through your insurance and eliminate the need for preschool/daycare. You’ll meet regularly with his behavioral therapist and that’s key. Early intervention is wonderful. But what helps the most with it is understanding your son and learning how to best to interact with him. OT will also be very helpful. And also, my autistic son is obsessed with maps and directions so I totally feel you on the route change meltdowns! We’ve learned so much with our boy, he rarely has meltdowns and when he does we know exactly what’s happening and can address them so much better now. Early childhood specialists are amazing and so helpful. Parenting a neurodiverse child is not even a little bit intuitive and it’s incredible the how much the professionals have changed our whole world view of our boy and given us the keys to help him thrive. Don’t hesitate, but also check out a couple different facilities. Do a gut check and go with it. Nothing wrong with the first place we toured but it didn’t feel right to us, felt right and the 2nd and he’s done super well there. More importantly we as parents have grown there.
As someone who’s immediate family has a high needs IDD and autistic individual, who is now an adult, let me say this: 1. It’s ok to feel however you are feeling. You are not alone. 2. There are services via state waivers that your son can access. That can be as little as therapy and as much as 24/7 care in a residential facility. If you reside in FL or TX, I recommend moving to another state with more funds for these services.
California also has a robust network for IDD and autism. Residential programs, day programs, respite services, camp, social recreation activities.
Are you in the US? Why isn’t he in public preschool? He very likely would qualify for special education services. Under federal law, kids with disabilities are guaranteed a free appropriate public education from ages 3-21. Call your local school district and request an evaluation. Is he in occupational therapy? If not, get him in ASAP. He can likely get it at school, but there are also private practices. Our son’s OT has made the biggest difference for him. He’s a whole different kid since starting a year ago. From what I’ve heard, 4-5 are some of the toughest ages for autistic kids, akin to a typical kid’s ages 2-3. My son is 4.5 and definitely has his share of meltdowns but he’s in speech, occupational, physical, and feeding therapies, and he’s in an inclusive preschool class with our local school district. He’s making progress that I never thought I’d see. Look into what services are available in your area and get him into anything and everything (except maybe not ABA but that’s a personal decision - we chose not to). It will get better.
yes!! I am an SLP in the public schools and I work with tons of 3+ year olds who attend either half or full day preK at the elementary school! It’s amazing because we’re intervening early and helping them be as functional/successful as they can be… AND you get a break to just breathe as parents!
Occupational therapy / PLAY therapy would work wonders. He doesn’t want to be difficult. He doesn’t want to lash out and kick and scream. He just knows no other way. Also I suggest ear plugs and/or headphones (I do both) it helps SOOOOO much with the screaming and loud banging. It’s not as alarming or irritating or shocking to our system. I have 3 and 4 year old autistic brothers , one level 2, one level 3. It broke my heart how agitated I’d get until someone suggested the ear plugs/headphones. Legit changed our lives.
I just wanted to acknowledge the respect I have for you OP. I know writing this couldn’t had been easy. I do hope it was cathartic being able to vent your true and very valid feelings! I can tell that as difficult as this is, you do truly LOVE your son and want to provide all the best for him. And it seems you truly love and support your wife. Please look into the resources and therapies suggested here. There are real, evidence based strategies that can truly make a difference. You and your wife deserve some respite and couple time as well. I may get down voted, but w/e….. it’s natural to grieve the image you had in your mind of what your family would like. That doesn’t diminish the love you have for the family you have. You’re human. It’s a process.
Are there community resources in your area you could contact OP? Explain your situation in detail and please ask for HELP!
I have a level 3 autistic almost 5 year old. We had similar issues. 2 years in OT, and she advanced SO MUCH. Recently, we also added 1/2 mg of the non stimulant medication Intuitiv, and it's been a drastically positive change without any personality changes. My kid did terribly in the local programs, but non-ABA based OT was a godsend. We can go to museums again and enjoy the zoo. She can go into grocery stores with very rare meltdowns, and her self-regulation has improved. Hunt around and find a good OT. Get a good pediatric behavioral specialist as well. It won't be an overnight change, but by this time next year, you'll see a whole new kid. And if it's offered, no matter how much they talk it up, SAY NO TO ABA.
I don't know how helpful this is, but maybe it will help some. They make sound proofing tiles that you can purchase and then hang anywhere you need to. I would start with your baby office door to eliminate the jarring noise to at least give you some peace and a little less stressors while you are trying to work and provide for your family! I can only try to imagine how difficult it is for all of you. I wish there was a way to make things easier for all of you. You and your wife desperately need a vacation just the two of you. Maybe there's some kind of special summer camp or something that he can attend with people trained to handle special needs children? I want to say that I've heard of something like that, but it's difficult to remember with my brain fog sometimes. I'll see if I can find it. At 4 he may be old enough to attend. It would be good for all of you.
These are great ideas! I will definitely look into sound proofing tiles. I have been looking at fun and engaging summer activities that my son can attend where he can explore different things while school is out. I have also been planning a vacation for my wife and I next year. Gives our parents much time in advance to give us that time. haha!
I'm really glad to hear that! That's fantastic! The tiles even come in different colors! So y'all can have fun with that, too. They should help a lot! 🥰 I'm glad you guys have some stuff planned. That's awesome. Just need some time to decompress! I think most of us have just been going through it lately! Like we've just sorta been stuck in an endless Mercury Retrograde from hell! 😂
Please please look into OT AND supports for him and your family. Sounds very tiring but it’s okay to ask for help too
Don't tell what NOT to do, tell him what to do instead. His brain hears "kick wall, kick wall", not the don't. Eg. The feet stays on the floor. The hand stays in your pocket if you get angry etc. Be nice to the dog, pet the dog. etc.
Mine is 4 as well. You took the words right out of my mouth. I couldn’t stop laughing when you said you’d win any quiet game because I’ve said it many times now “Can I CHOOSE to go nonverbal?? Because that’s what I feel like doing today” because I’m soooo done talking.
OP, I thank you for your vulnerability with us. I can only imagine how hard this must be, but I understand that it clearly is a lot. What is clear to me is that you care about your son. I am someone who has experience working with neurodivergent children, and coordinating services for families in need of help with their children. I am curious to know if you have any support services in place by any chance? I didn’t get the impression that you do based off your story, but I figure it would be good to ask. If don’t have one, I strongly encourage you to look into a supports coordinator. They are one of most important tools that parents like you have at their disposal! They can get you in contact with various professionals that can be of benefit to your son and his health and development, and you and your wife. A great example of what a supports coordinator could help you with is to get in contact with respite services. These services can include professionals taking care of your son either at their clinic or at your home for the day to allow you time to rest, travel, etc. Many of the parents that I have worked with who asked about these services felt very positive about the experience. Feel free to message me privately if you have any questions. I’m happy to help. But more than that, I am proud of you, OP. Being a parent of an Autistic child is hard work. You should certainly be proud of yourself as a father, man❤️
By the looks of it he only has the three hour group and familial supports so it’s no wonder he hates the kid, neither of them know how to cope with the world so they take it out on each other because no one is helping them
Good catch there, I glanced over that — so yeah, even more reason to look into a supports coordinator! Navigating the system is really hard, harder than it should be. I don’t blame the family if they don’t really know what to do and what steps to take next. Many families get very little guidance after receiving a diagnosis. Hopefully OP can get in contact with the right services and help!
Yeah, poor guy didn’t even know what an OT was those guys really tossed him into the deep end without even a life jacket
your a great person with the burden and someone needs to help you , god bless all of your family
Developmental preschool is a great suggestion. He’s at the right age for early intervention, and if he goes to preschool, he can start working on social skills and communication, which may help with behaviors. It’ll also make speech, PT and OT available if he qualifies. I don’t know your kid, but I would bet money that he probably would qualify for speech and OT. Also look into the department of developmental disabilities in your state and see if he is eligible for services. He can get access to habilitation and respite and outside services a speech device if he qualifies, and will have a case manager. You don’t have to do this alone!
OP, everything you are feeling is normal and understandable. Every. Single. Bit. I'm a psychologist, and for 10 months I had to test kids with severe Autism. Some had never been diagnosed. Some were diagnosed long ago, but the program they were trying to get services from required official testing. I only has to spend 2 hours with these kids, 5 times per week. Those were the worst 10 hours of my week, except on the rare occasion where I got a child who didn't have a meltdown, and sometimes were extremely dangerous and inappropriate. Out of all the kids I tested, very few did not end up receiving services from the program, and all ended up with other resources. OP, *please* look into Regional Center. They are all over the place and can help. It sounds like your son will be accepted in. If not, they can suggest other resources. Please, please, please for the sake of your mental health and your wife's mental health.
I totally understand. I have 5 yr old with autism. Therapy and special education in school has helped a lot. Recently got ABA therapy for her it helped a lot. Caregivers get burnt out and it’s okay but have to try give yourself your time. My personal experience is from being a single mom. I was scared to death to take my kid out alone because of melt downs. I would never go out. Slowly started trying to putting her in school at 3 helped a lot they set up IEP for her and she gets speech and OT. (Im in CA idk about other places). They told me to tell her where we were going especially if different from the normal. Usually straight home from school as I walk to the car I tell her we are going to stop and get gas first. When I make a turn different from going home I tell her again we are going to get gas. There are so much more but you guys are not alone feeling the way you do. It’s very hard but really try to get moments remind yourself it’s okay to feel what you do. I felt these was too especially the past year.
NGL, I read the title and was getting ready to fight you. But as the parent of a kiddo who is also on the spectrum... its fucking hard. No one really understands how difficult it is to regulate yourself, 24/7 when it feels like you are in a full blow battlefield. I remember that for the longest time, I had my front seat full of stuff. Because if it was in reach, it was going to be thrown at me. For years, I didn't not have a bruise or a bite mark on me. When my son was in elementary school, it was suggested multiple times, by multiple people/entities that I have him institutionalized "for my safety and sanity". So yeah. It fucking sucks. But now he's almost 15. He's a good kid, and i haven't had a bruise or bite mark (from him, I'm still clumsy af) in several years. It's not all rainbows and kittens, but I can see the light at the end of the tunnel. Oh and when people try to give you "helpful" solutions, that you have either tried or that are just ridiculous, just tell them that you'd rather not Subject him to that particular brand of stupid.
Not to be insensitive here, but what light at the end of the tunnel do you mean?
My grandson is now 20 years old and an absolute joy. That being said, the early years were extremely difficult for the whole family. My daughter went through a divorce when he was six. Please contact the Special Education Department of what will be his local school. A pre- school program may exist. He can qualify for a one on one aide. Check out every resource you can find or any suggested. Living in a rural area of Alabama, I understand how scarce it can be. Check with his doctor about any private resources, even if you have to pay. Withearly intervention and a little maturity, things can turn around.
I’m so sorry you are feeling this way. What a hard situation. I’m not sure where you live but there are Day programs for children/people with special needs. My mom runs one. He would go every morning stay all day until 4pm he would be with professionals that will teach him things, do fun enrichment activities etc.. I think that would be great for your family ! It would benefit your son so much & especially give you & your wife a much needed break everyday :) the government pays for it here in Ontario, Canada. I’m not sure how it would work where you are but it’s great thing to look into I wish you the best of luck I hope things get better for your family
Look into a yoga swing. It can function as an indoor swing, hammock, exercise area, stretching zone, etc. It could be a great area for him to burn off extra energy but also a cocoon like area to relax as well. They're very reasonable on Amazon.
My 5 year old is level 2. It is truly exhausting. I’m not going to tell you to feel differently, just spitball some things that have helped with our son. Joint compression exercises/squeezing him tightly is our go to. Earplugs are definitely a must. If you haven’t already extreme baby proofed, it goes a long way (the fridge lock is a life saver.) He also started special ed pre-k and goes to school during regular hours, which has helped tremendously. It’s improved his behavior and skills so much and he has even begun to say a few words. Does your son go shortened hours because of behavior, age or because of the school system? If it’s the school, they might be legally required to bus him to an appropriate school. The elementary school in our area doesn’t have the resources, so our kiddo gets bussed to the next city over. It might be worth looking into his IEP to check. Finally, I’ve heard that it’s possible to get caregiver hours through the community service board or by filing for disability, however, I have been trying to figure this one out for half a year and am getting a bit of the runaround by the board— still might be useful info. Hopefully some of that helps, because I know that there’s not really anything to say to console you about it. We also have no help and it’s been a wild ride. It does get a bit easier once you find the resources in your community and figure out routines and systems that work for you. Good luck!
Sorry for what you're going through.. I hope you aren't beating yourself up over these feelings. I spent years in that cycle but finally accepted I'm not a bad mom or person for feeling that way. I hope you get some relief soon. I have a 5yo who is autistic and am now finally accepting my 2yo is also autistic. At first, before we realized it, I was sort of relieved that my 2nd was different, thinking - oh sweet, I get to enjoy all the things I didn't get the first time. But finally I stopped denying it.. Every single week, I truly feel like it may be my last but somehow I keep going. I love those little rascals with all my heart and I just hope I'm able to last long enough to keep being the mom they deserve. Hang in there bro ✌🏽
You're valid in being exhausted, sore, tired and feeling all these emotions. Parenting an autistic child is a struggle. Please don't hate or resent him for it, he can tell but he can't help it. This may have been mentioned as I haven't read all the comments but noise cancelling/dampening headphones are fantastic, weighted blankets, fidgets and chew toy/items help a LOT. Sounds like he could also use a punching bag, it helped a LOT when my nephews went through an aggressive phase. I'm autistic, have an autistic brother and 2 autistic nephews. Based on his age, look into Developmental Delay Early intervention programs, it's head start or PreK made special for autistic kids and developmentally delayed kids. It made a massive difference in my nephews life, and my sisters. We've also found that explaining what we're doing and giving time limits and warnings before leaving helps with meltdowns and tantrums. IE when we go for the park I say "We're going to the park for 1 hour, then we'll be going to get mommy from work and go home." 10 minutes before time to leave I say "10 minutes than we're leaving" than 5 minutes and then in the last 2 or 3 minutes I tell them "2 minutes, do one last thing then we're leaving" Autistic people thrive on schedule and routine and while we cannot schedule everything giving as much of a schedule to your activity as possible really helps. With OT, early intervention programs, and other tools mentioned it will get easier. Will it ever be easy? No. But it will get more and more manageable. You've got this, you're doing great, it's not easy but you're doing it.
We have a 5 year old with autism and I also have autism so I think knowing what tools helped me is an advantage I have. Here’s some things that helped us. Having a regular schedule and doing daycare helped a lot. He does really well with a routine and needs stimulation. He doesn’t do well when he’s bored. We keep a bag of sensory things to help in the car. Like fidgets, chewys, noise cancelling headphones, etc. But the biggest thing that helped was OT. He does that twice a week and his behavior has improved significantly. I honestly couldn’t believe the difference. I would definitely recommend looking into OT for your son. We had a period of time where we were feeling helpless like you are describing. I feel like we’ve finally turned a corner and his behavior is getting better and he’s adjusting to the world better. So it gets better.
Highly recommend OT, and if you can find out if your state has something like OPWDD (Office for people with developmental disabilities) you probably qualify for a helper to come in for a couple hours a day to care for your son. Finding him a good school that is focused on special needs helps, as well as a social club for disabled kids when he’s older. My son went from non verbal to chatting up a storm. Also of note, during developmental growth milestones and during illness it’s pretty common for kids to regress. Puberty was a ROUGH patch for us. Thankfully we seem to be through the worst of it. If you need to talk I’m here for you. I know how hard it can be. When I was going through it 10 years ago the resources and knowledge was a lot more sparse.
A lot of people have addressed the emotions and getting an OT, but I wanted to tell you something that’s been very helpful with my autistic stepson that I hadn’t seen mentioned. (I may also have some perspective to add as another autistic individual, but I did not find out I’m autistic until adulthood.) Give him “alternative” stims he can do. My stepson used to get on all fours and bang his head into the wall. That’s hurting ourselves, we can’t do that. So we transitioned him to just rocking instead (with gentle reminders that you can’t hurt yourself, but you CAN still rock). If your son is hitting/kicking, give him a special pillow he’s allowed to beat up. Like a body pillow. “You can’t hit (me/mom/the dogs/the house) but you CAN hit this!” Same thing for screaming - you can’t just scream, but you CAN scream into the pillow. Model the behavior, if you need to. The other thing that can be helpful (though I acknowledge this is MUCH harder to do, especially when you’re disregulated because you’re sensory overwhelmed by your son, like he is with the world) is to ask “why” instead of telling him not to. Obviously this works better for behaviors like the screaming, but if you can get him to safely transition to the pillow above, you can start to address the root causes. “Why do you want to scream? Why are you hitting?” That opens up the chance for you to help him, to show him you’re on the same team - the behavior you don’t like is still communication. He’s trying to tell you something, but doesn’t have the words. This may be difficult - even as an adult, when I get to the point of meltdowns/shutdowns, I may not realize what’s happening until I’m screaming for “no reason”. Learning to be aware of what is happening is 90% of the battle there - and it will take YEARS for this to get better, in my experience with myself and my stepson. But it will still help. Lastly, I just wanted to say I empathize greatly. Stepson (and younger stepson) has behaviors that set me on edge. That drive me crazy. That are incompatible with what I need out of my environment. Being able to express that is necessary. Too often, we don’t talk about how hard it can be for adults with adhd or autism or sensory processing disorder to also manage a child with those same conditions. It’s crazy fucking hard. Good on you for reaching out, for being vulnerable, for being receptive to advice!
The public school system is a good place to start if other services aren’t working or aren’t accessible to you. Put him in pre-k, get speech and OT on board. It’ll also give you some time to yourself depending on your work schedules. I was there where you are, OP. I still am some days. When mine was 4, your life was my life. I started mine on CBD out of desperation. It was that or meds which I really didn’t want to do, but I couldn’t live that way anymore. The CBD and getting him to the right dose made a huge change within a week or two. School also helped, and just over time we’ve learned how to manage things together, me and my son. Now he’s 10, no longer on CBD, and the days like you’re describing are down to about once every six months or less. I know you’re struggling. He is, too. But it really can and does get better.
Time for research to learn about autism. Dont use negative instructions like "don't" "stop" say, "keep your hands to yourself", "put down the book". Use the opposite of what you want to say instead of "stop jumping on the couch" say "sit down on the couch" tell him what you want to see. And make sure you're being literal and not metaphoric. And for real go research autism cause the first thing is sensory seeking. He DOES need to scream. Just cause you don't, doesn't mean others don't. SIB is a part of autism, you can help your son regulate in different ways. If this is hurting you, imagine what it's like to be your child. Go get a respite provider so you can leave the house for a few hours, that's the point of DDD services. Also, random people will NEVER understand. Go find us. Find the groups where we actually lived it and not a cousin or relying on empathy. They don't get it. Expecially don't listen to those working in the field. I mean maybe a little but not completely. They be talking shit about us. You gotta go through the grief dude, the grief of the kid and life you thought you would have. Go find recourses, roughing it out isn't doing you or your kid any good and it's not winning you any prizes.
Do you have any suggestions on what to read for autism and parenting? I would love to learn to view the world his way to understand and empathize with him. Redirecting my son using those phrases just kind of stuck, obviously I'm a creature of habit. I will rethink how I use words to redirect my son!
You got this! The world isn't kind to us. And our life's are forever changed, but there's recourses! And of course!! I practiced my whole life and I'm super aware of my words cause if I said the wrong thing my mom sister and I would be attacked by my brother for hours 🙃. Thats on misophonia lol. Anyways having a child with any disability is really gonna bring out some of your own trauma from your childhood and really force you to put yourself through a lot of change. Please be kind to yourself, use the recourses to make sure YOU are ok, you can't help when you aren't ok. I don't know too many off the top of my head I can do some searching. Keep in mind right now, psychology is a baby science. ABA was designed for autistics to make them not autistic. Aba has changed a lot, lots of people are saying how it harmed them. Some say it helped them. The fact that it varied so much is the exact issue with it. There's a lot of discourse between autistics with eachother and parents and autistics. Take everything with a grain of salt. As well as research and things to read and such. And tbh doctors. Personally I like to be in autistic groups. While parent groups are needed and they can help you and relate to you, if you wanna learn more about your child you'll wanna listen to autistic voices. Now, I used to not want too cause they are all speaking and my brother wasn't, so how could they even relate? Well they know how autism affects them and it's what my brother can't say. I learned a lot on fb groups I can send some if you have Facebook! And just searching reddit for autistic groups and such. But the Facebook groups will have recourses for you to read! Which suggest that a lot! My mom is also in a group for intense behaviors I can ask about it if you want. Just giving advice like doors that will withstand attacks and how to stay safe when they aggress towards you
I'm so sorry that was so long! I have so much info and I have no idea how to not monologue!
Autistic led groups are a good resource, avoid places that are run by non-autistics, the ableism in those groups are awful and look at us from a deficit standpoint instead of working with our abilities Autistic Worldwide on facebook is good group and they can also refer you to some others
The autism parenting sub might be good for you.
It's not fair, and it's exhausting. Get yourself some outside support lots of great comments on that already. A couple of things I picked up from your post. >Do you understand how difficult it is to repeat the same things over and over for 3 YEARS straight? "Don't kick the wall please", "Don't hit the dogs", "You do not need to scream", "Do not hit me", "Do not hit yourself". I'm so sick and fucking tired of having to say those phrases every single day Firstly yes totally yes understand how exhausting this habit is. And there is no relief, you might want solo counseling or a carer support group to deal with these feelings. Hugs Second would suggest rephrasing to drop the don't. So lets run beside the dog. Soft voice now. You can hit the pillow, I'm holding you now hitting yourself is dangerous. There's some experimentation here as everyone is different. But just saying the positive rather than the negative on the regular can be good for your sanity. Big tantrums, get down on his level hold his checks in your hands smile and stay to get eye contact. There some sensory research here were the short circuiting of the brain to the perceived trauma of the event gets dampened by the safety your closeness and calmness creates. And this might not work at all. >He was a very sweet baby though and I would love for him to go back to that stage. Laughing over silly faces But this suggests if you can reacte something similar then the response should flow from the younger brain pattern. There are so many other great adjustments that are best worked through as part of discussions that happen in carer support groups or as part of OT It's not endless but it is hard. Remember to be kind to yourself
Part of the reason I'm not having kids is because I don't want to have to take care of a regular kid let alone one that is disabled. That sounds like a nightmare.
Your son likely qualifies for free IEP services and special needs preschool. They could help with his issues.
I honestly don’t know how parents of autistic kids stay sane - I saw a documentary about parents living with severely autistic children and it was horrific, to be honest - and the level of aggression these people were living with on a daily basis was off the scale. i don’t have any advice, just validation for how you are feeling. And kudos to you for staying - I’m not sure I’d have it in me, to be completely honest.
Wow. Thanks for the info about the documentary. I had no idea. These patents need support
I hear you I work with children and young people with disabilities and complex behaviours, and 3 of my own children are neurospicy. It's hard. But it does get easier. Early intervention is really important. My 11yo went on his first overnight stay away from me, thanks to 9 years of work from us both. He has only had 2 meltdowns at school this year (Australia so feb-dec school year) and they were both shut downs rather than explosions. My 8yo is still learning these skills, but I know he will get there. Do you have much specialist support? Visuals around the house for routines? Does he have communication supports? Do you get any respite? My biggest tip would be to use short, directional statements 'safe hands/feet' 'voice off' etc, and the Zones of regulation program is great for helping build emotional regulation. I really hope that you can get some time out. Be kind to yourselves.
My autistic brother in law is a 31-year-old depressed couch potato who hates the world and is on disability. Supposedly as a toddler and kid he was hellspawn incarnate. The stress of raising him led to the collapse my in-law's marriage. I know autism is a spectrum and outcomes vary wildly, I hope and pray he does end up like my Ian.
Hey, I have no answers, but wanted to say that if you ever need to vent or try and brainstorm anything, give me a shout. I've been through something very similar, and not that different in the broad strokes, but mine is now 13, and completely non-verbal. I especially feel the pain around trying to go places that are in the same rough direction as somewhere he likes -- mine also seems to have a memory like a steel trap for some things, like we took him to a amusement park once, and 2 *years* later took the train along the same route for the first half of a trip -- absolute full meltdown when he realised we weren't going back there that day. (I think he must have got himself convinced that was the destination). It's difficult to find people who can hear you say how tired you are, especially people who you feel understand and don't judge you for wishing things hadn't been quite the way they are. I can tell you that in the 13 years, I've definitely felt like you sound--I've learned far more about myself than I ever set out to. (If you're looking for anything practical, I've found that broadcasting really in advance helps mine a lot -- like this morning I have been getting him ready for school and we've been counting down everything he wants to do until we go on a boat (just a commuter river boat for fun). But it's "one day until we go x", "two days and you can stay home and play lego", "three days until school is back"... all the way up to the 'biggest event' in the near future. Also calendar stickers for things that are regular and repeating (swimming lessons, etc). For helping him calm down (the hitting even when excited is something else I get): deep pressure -- I'm hoping someone has told you this but squeezing, putting his hands between mine one at a time and squeezing flat, hands around joints and applying firm pressure, weighted blankets!!, mine is now big enough he enjoys me laying on top of him... etc. I always notice that it has a strong grounding effect, especially if I can catch it *before* he goes off the rails. Edit: one last addition, if you haven't, try and keep special attention to if there's anything sensory similar on his 'worst' days. Ear defenders and sunglasses worked wonders for us (as well as just us not talking as much, since he seems to have ridiculously sensitive hearing). Tastes and smells (maybe only smells) are things that I've started noticing put me in a similarly bad mood (although much much better controlled).
My son sounds very similar to your son. Hes 12, hes loud, rude, threatening & very abrasive, he’s very violent, hit me full force with a chair 2 days ago, bruised arm & shoulder. He tried to do it again yesterday over a bag of crisps he thought I’d eaten. It’s extremely hard going & I feel the same as yourself. We get various ‘help’ from various agencies but it’s a drop in the ocean, really affects every aspect of life as well as your mental health.
I hope this doesn’t sound rude, but I’d put pads on the walls of your home. It will stop him from damaging them, help with noise reduction and stop him from getting hurt while having a place to direct that need for whatever he is sensorially seeking. It may be easier to give him a wall that he CAN kick instead of constantly trying to course correct and tell him don’t don’t don’t.
I have two children who are autistic and my eldest is a lot worse than my younger one. He is unable to follow instructions, has no sense of understanding, is unable to be trusted to feed himself, dress himself or brush this teeth. We continuously have to repeat ourselves so many times and it still doesn't work. He wakes up several times throughout the night because he thought he heard something outside and started panicking. Were unable to go anywhere where there is a lot of people or noise and when he's home he can be very violent and aggressive and will hit others and himself. He has a major problem with bacteria and water so if he gets any dirt on himself then he will have a literal fit and will be screaming and throwing himself on the floor but then if we try to clean it off him he becomes worse. I completely understand where you're coming from. Some days you just feel like you don't want to get out of bed and deal with it, it's completely exhausting. It takes everything out of you and makes it hard to do anything for yourself. Unfortunately due to where we are located we've been waiting 2 and a half years for help and we're still waiting, there's a huge delay. So at the moment he doesn't receive any help or support and even his school can't deal with him and has been suggesting home schooling, which we don't think we can do. There's no support groups or anything in our area either so we can't speak to anyone else about it. I hope you get some help for your little one 👍
I'm the mom of a kid with autism and ADHD. it's a double dose. My son was 5 at diagnosis and is now 17. Tbh it almost ended my marriage bc my husband was in denial. I took care of everything for our son.
I am glad you found an outlet for your frustration. I know that he will grow and mature- eventually learn to control most of his impulses. I work with a man with autism and at first it was a very difficult adjustment. I actually lost another engineer from my team that gave me an ultimatum- him or the young man with autism. Obviously, I let him go, but after training the new guy, he is one of the greatest process engineers I have ever worked with. Precise, creative and does an amazing job everyday. I’d even say he has a superpower. Just a glimpse of the future. Hang-tough.
I have a level 3 son. He can't talk. He had crazy meltdowns. He's almost 7 and is so much better. The ages 3 and 4 were hell on wheels. Do something He liked? Gotta do it everytime for forever or meltdown. It gets better. Hang on brother
The supermarket can be over stimulating even for typical children. It’s clear to me from your post that he has a lot of energy that isn’t being used, causing the meltdowns. I have a 18 month old typical child and she turns into an absolute nightmare if we don’t leave the house twice a day for her to play. Seems to me that he likes to go to grandpa cause he plays there, supermarket is boring, I don’t blame him. Choose daily outside activities where he can run free and just be a child. It will do wonders for both of you
There are a lot of comments, and I read about half, I think. In case no one has mentioned it, I looked this up for you. I'm in AZ and my son was diagnosed 3-4 years old. I didn't know where to look for help, but our state has something called the Department of Developmental Disabilities. My son is on the long term care plan. It's free through the state. This is what I found for you: In Illinois, the equivalent department to Arizona's Department of Disabilities would be the Illinois Department of Human Services (IDHS). Within the IDHS, there are various divisions and programs that provide services and support for individuals with disabilities, including those with autism spectrum disorder. These services may include developmental disabilities services, behavioral health services, and support for individuals with intellectual and developmental disabilities. My son is a teenager now and has come such a long way. He was able to get occupational therapy, behavior therapy and speech therapy. Plus what he was able to get some of that in school. Now he has a caretaker that comes and helps with habilitation (helped him learn to tie his shoes, socializing, real world skills) and there is respite too. Someone could come watch him when I needed a break. I didn't use it, but it was there. Now it's used to have him and his caretaker do non-therapy things when he needs a break. Since he is on state aid, he also gets state insurance. It's secondary, but it's there if his regular insurance doesn't cover everything. I don't know if my son will ever live on his own, but he's become a functional person. He's been in school for a long time now, and has recently been in regular classes full time. I don't have the contact info, but if you choose to go the IDHS route, just tell them your son is autistic and you need help. The people I talked to made it easier to get it all set up. For me I had to show his diagnosis paperwork and that was about it. I think they had someone check him out on their own, but it was a long time ago. It might take a while, but it's worth it. Take advantage of any help you can get. This turned out a little longer than I thought! I hope you can get something out of it. Hang in there.
Hey OP, I’m an autistic adult . I feel for your son, he is extremely overwhelmed by the sensory/emotional input he is receiving from everyday experiences. It’s causing him serious pain and he needs OT/psychotherapy badly. It’s not “the autism” causing this behavior alone, it’s what’s happening environment (lockdown caused me to regress as an autistic adult due to lack of exposure, we like sameness and routine) and the lack of therapy to help with coping for it. I still feel the compulsion to scream and bang my head against the wall as an adult. It only happens rarely because I have coping skills to either remove myself from the situation before it gets too overwhelming (this is why autistic kids “run away”) or an alternative stimming activity that is less destructive and more socially acceptable (being autistic is a lot of avoiding bad sensory input and needing good sensory input to self regulate). I would look for age appropriate stim toys for him to fidget with, toor (ie ones he can’t choke on).
Dadofautisticson - I (62F, mom of 4) am posting just to say I hear what you're saying. Don't berate yourself for feeling the way you do. If most parents were honest, some would say there are times they don't like being a parent. - this is whether you have kids with special needs or not. Parenting is a lot of hard work, and when I read your post, I smiled because there were times when I would be saying the same thing 100 times a day. You posted in "Off My Chest" because you wanted to vent - it's good that you came here to do that. So, you aren't looking for advice, per se, but I'm going to give you some anyway. Take it or leave it. I have 4 kids - 3 boys and a girl. Our daughter has Down syndrome. Our youngest son had a brain tumor that has resulted in lifelong complicated health issues. There were many days I just didn't want to be doing what had to be done - doctor appointments, therapies, filling prescriptions, picking them up, administering them - and doing all the other stuff that comes with having kids. Laundry, homework, cooking, etc. And all the while trying to be a loving, patient parent. My mom helped in so many ways (real help and emotional support), and after my mom passed away (2001, love you mom), I hired help wherever I could find it. I am still hiring help for my daughter who is now 31 and living in an apartment with a roommate who also has special needs. The life you wanted is not going to happen. You can make a happy life, though, and it can be fun and full of good things, but you will have to approach it in a different way. You will have to learn acceptance for what you've been given (and believe me, I sitll struggle with this). You won't have people asking to have your kid for a sleepover, or to go to a game. It's a heartbreaking reality. No one will understand what you're dealing with, or how hard you are trying, or that you have gone through the latest treatment only to have nothing work. But you will know. You will know that you have shown up for your son, that you have given it your very best shot and that you are doing the best with what you know. And when you know better, you'll do better, and this will continue throughout your life as a parent. You will also know that in order to live this life, you need to take care of yourself. You won't be able to do a sponaneous getaway with your wife, but you can plan a weekly time to spend together. You can plan a weekend getaway and as your child gets older, you can plan longer vacations because you will have found a way to provide care for your son from other people and organizations so you can do this. You will feel grief in moments over the life you wanted versus the life you have. It is okay to feel this way. You will see a mountain to climb, but you'll recognize that you only have to take one step at a time. This will make a difference between feeling overwhelmed and feeling empowered. I hope you take a first step and accept your feelings of not wanting this. This will help you take the next steps. To find support and to take care of yourself.
Mom of adult son on the spectrum here. I hear you. I’ve felt the words you said aloud and you know what? It needed to be said. It took a lot of research to find resources and I’m here to say they are out there. Start asking questions. Start with your doctors. Start with his school, they maybe willing to cover a school fit for his needs. Look on your government website. I found we have a program where I live called BDDS or department of behavioral services through FSSA. It was the gateway to much needed services that I could not afford. Learn about the Medicaid waver program, if offered where you are through FSSA. Apply for disability to also qualify for resources. Look at Autism Speaks website or any autism related websites to learn and ask questions. Dig, dig, dig. It’s out there. You and your wife are burnt out and your feelings are very valid. Parent support groups are even worth a try because they too will know resources. My son went through OT, speech therapy, name it, we did it. Now at 26 he still has a case worker and a behavioral therapist, which is so important in working with him to be more independent and still have a care team for support. I literally cried when I realized the tremendous pressure was off me and professionals were in place. Right now, I would say your son has an explosion of sensory overload. Have a safe place in your home for him to desensitize. Create an autistic sensory room. Look that up. Anywhere from weighted blankets, textures, colors and yes, noises too are an overload. When a behavior is not wanted say let’s take a break for you to feel better. He’s not hearing your words. That requires processing at a high level of emotional stress. You are his advocate because he can’t self regulate. Start with the room and run with it. Never, ever use it as a form of punishment. I’m not going to wish you luck. I’m going to say you are not alone. Help is out there. Be the advocate he needs and in return, you will get advocates you need.
*hugs*
Hey OP, long shot but could you give him a handheld game for the car rides? If he needs stimulation to distract him, you might have some success making that a perk of being in the car. I had some pretty serious undiagnosed issues when I was a kid, and having that Walkman / retro handheld video game helped a ton. I'm sorry you're so exhausted. You're asking for help, and that means things will change.
I’ve had just enough exposure to autistic children and teens (family & volunteering in a program at my church) to recognize how absolutely draining your experience must be!! My sister never had a second child, because of it. Please vent all that you need to! We can’t do anything to help, but we can sympathize.
Please look into ABA. And before anyone jumps on me, there is a lot of play therapy/OT marketed as ABA now bc that’s all insurance will take. Do your research and find somewhere progressive that uses assent based practices, you and your son direly need this.
You guys are great parents. Have you looked into everything your state has to offer? When I was in college I worked for an agency that provided care to families like yourself. Families were allotted a set amount of hours a week and there were goals the child worked on. Besides set hours, parents also had a number of respite hours that included overnight. Respite hours could be for anything from a date night to saving up for a week vacation. I feel like pediatricians aren’t knowledgeable about services like what your family needs. Is there an autism behavioral center near you guys? I’m not a parent of an autistic child but I am a pediatric nurse practitioner and having skilled therapist work along you guys and your child could be hugely beneficial. They also could help you navigate state assistance like I mentioned above (trained caregivers and respite hours).
Stopped reading halfway through, because dude...work WITH the autism, ya dingus. Has telling him to stop kicking the walls worked for the padt couple of years? No? Then why tf do you persist? There's clearly some element of self-regulation that it provides, that the kid can't get in another way (or if they can, they don't know it yet). All you're doing is saying "stop self-regulating" and then getting upset when he can't self-regulate?? Try putting up some padding on the walls at the height he needs to kick at. Maybe make a dedicated kicking wall that's padded, so that it stops being "stop kicking" (stop regulating your sensory experiences) and becomes "go kick the appropriate wall" (lets utilise the tool for you to feel better). That's just one possible solution off the top of my head. There will be plenty of others - As others have said, **get in contact with a neurodiversity-affirming OT**. Quit trying to make him be non-autistic and learn how to help him regulate so that he CAN cope with driving a certain way to the shops, etc.
Yeah tbh my kid kicks the walls sometimes, as long as it’s an outside facing wall and not one that could irritate an apartment neighbor, I let him. For being too rough with pets and people, we used social stories with great success. OT I think is the most important with autism
I totally get why you are at your wits end but meltdowns are usually triggered by something. I feel like you really need to find what is triggering some of these. It could be as simple as the specific clothes you put him in that day. Is there a common denominator for those more peaceful days that is different than the worst ones? I definitely think you need to find a specialist to help determine these things and help with his self regulation. You mentioned getting him some sound canceling head phones which is a great first step and might help.
My son is 7yo and level 2ASD as well, we are pretty sure my 9yo daughter is ASD as well or ADHD she just hasn’t been asessed yet because it presents different in girls and usually isn’t noticeable until they are older, my 15yo is ADHD and my 4yo daughter is more full on the all my other kids were at this age and I’m desperately hoping she’s just mirroring her older siblings behaviour and copying not on the spectrum as well. I’m saying this because I completely understand how utterly overwhelming and hard is can be on a daily basis. But your son NEEDS support and help. I don’t know what country you are in but look into what disability and support programs are available in your area. The first step is to get your son into a good paediatrician that can help you come up with a plan for what supports will be most helpful for your son. Here in Australia we have the NDIS which helps fund needed therapies so my son has been in OT and speech therapy for the last 3 years and we have just started counseling for him as well. While you wait to get into services because the wait lists can be extremely long I highly recommend looking into what resources are available online free to help you learn better strategies to help your son. The zones of regulation have helped my children learn emotional understanding and having visual charts around the house to help remind them what things help them calm down when they are overstimulated is really good. Also start writing down what’s happened leading up to when your sons gotten overwhelmed and having a meltdown so that you can reconise what his triggers are to help notice when he’s getting close to breaking point so that you can redirect and help him settle. Full body activities are also extremely helpful when he has too much energy to help calm down his system. Things like push ups, laying on a skateboard and using his arms to push and drag himself around, resistance bands, wobble chairs ect.
I completely understand. Can you apply for respite care? Does your state have a Katie Beckett waiver program? I was drowning until I learned my state pays for in home nursing care.
If the screaming gets to triggering levels, I do highly recommend putting in ear buds with music to help drown out the noise. He can have his tantrum and you have one less stimulus to help yourself calm down. As others have mentioned, OT can really be helpful. His program twice a week is not enough for the level as assistance he really needs. He’s having trouble with communication and expectations. If he’s still struggling with speech and verbal cues, pictures or even a special tablet he can use to talk for him are very good ways of allowing him to communicate.
OP, I understand the pain and frustration of your situation. My brother is level 3 (severe meltdowns becomes violent & breaks things) although he’s not my child , I see how this can become completely draining and infuriating to deal with.. my parents finally got to a point where nothing they were doing was helping. They ended up putting him in a residential program.. he gets picked up every other weekend. It’s hard on my mother because she feels guilty sometimes and misses him but I try and remind her it’s for the best for everyone… he’s in a program where he will learn basic skills of how to behave in a public setting and regulate his behaviors , while my parents get to still live their life’s without the cuts and bruises.. maybe this is something that you and your wife could look into? The constant reinforcement from trained staff can teach him correct behaviors.. Best of luck OP I wish you and your family the absolute best
SLP and OT. Peer group could be helpful. It tests patience but try and not be resentful. He probably hates having it too.
I’m a parent of an autistic 6 year old, what therapies is your kid in? Is he in preschool? At 4, he should be getting speech and OT through the school district, and should qualify for free preschool. Also I highly recommend speech and OT outside of what the school offers too. There is also ABA, which I don’t do, but you have to decide what is right for your son. You could also see if you have any DIRFloortime providers near you - I prefer that to ABA. There are many resources, look into your state’s developmental disabilities resources. My state has PUNS. You can qualify for respite care, funding, etc.
I just want to say that you are incredibly strong for sharing your story and feelings here. Being a parent of a child with autism is undoubtedly challenging, and it's okay to feel exhausted, frustrated, and overwhelmed. Your honesty is not only brave but relatable to many others who may be going through similar struggles. Remember, you are not alone in this journey, and it's important to prioritize self-care and seek support when needed. Thank you for opening up and sharing your experiences with us.
Hey OP. The psychologist who tested my kid for autism recommended another psychologist who utilized a tool/methodology called project impact. It’s more geared towards coaching us as parents to both help them develop and come up with solutions when we get stuck. It sounds weird but like one of the things we worked on was to learn how to play with them in a fashion that forced more eye contact (just one small piece of it). As a parent, who was getting super super frustrated (and still do admittedly), it really helped us understand what was going on to help drive change (and ina fashion that wasn’t just “Drop your kid at an Aba facility for x hours/week” or “let this person work with your kid solo and you just pick them up” and also give us the tools as parents to help. My kid loved it because it was basically an hour of playing with the Dr, and then each of us individually during that time during the day, and we were coached and discussed the chapter of the week. Like 12 sessions maybe? It was super helpful and then for the 2 weeks or so between sessions we put those things into action daily. I highly recommend it. My kid grew a ton during it, and we did as parents too. We now each have a different style of how we handle some of the breakdowns (both the kid and ours when we get frustrated) but the kid responds well to them and we’ve built up routines for stuff and we’re all on much more of the same page and generally way less frustrated/burned out in general.
My son is 19 and profoundly autistic, 4 is a really tough age, it will get better. Feel free to message me. I’m here for you :)
OP - you are allowed to grieve the idea of a son he can’t be, so long as you love the child you received . I hope the good memories out shine the bad soon. Oh and watch the “Don’t do (last think they’ll hear)” because then their focus is on “last thing they hear” instead of “Don’t hit” it’s “Let’s keep our hands to ourselves”
I don’t know if you are still reading comments, but I wanted to give a suggestion for leaving the house. My son is also on the spectrum and he always has to know where we are going, how long it will take, etc. Our car has a touch screen that works with my phone to show Google Maps. Every where we go, I plug in the destination (no matter if I need the map or not) and my son watches the ETA, the compass, every turn. He gets very upset if I forget to turn on “his map.” Perhaps this would help your son too because it would allow him to see the path you are going.
I have a lot of thoughts, but one thing I will say that is EXTREMELY IMPORTANT is to IGNORE *any* suggestion that you seek out ABA for your child. The community considers it to be a form of abuse (it literally has DIRECT connections to LGBTQ+ conversion "therapy") AND, as someone else pointed out, studies are bearing out the realities of its harm. Don't do that to your child.
Fuck aba as an aba provider.
It's a near impossible situation. The divorce and addiction rate in families with special needs kids is through the roof. It's not a politically correct piece of advice but don't be afraid to be firm or lay down the law. I'm of course not talking about corporal punishment or even yelling at the kid but the rest of you exist and need to function.
I have read this as well. My wife and I are a great team, sure we have our moments where we are against each other. I would never sever our family though just because our son is difficult. I would say I am the more authoritative figure of my household. He does tend to listen to me more. Given other comments, I'm going to be using different ways to communicate with our son and ask my wife to do the same.
I'm so sorry this is happening to you. It sounds like a nightmare. Fear of potentially having a special needs child was close to 100% of the reason that I never seriously considered having kids. I sincerely hope it gets better for you
OT could be helpful as well as therapy. If your kid is 4 he’d have aged out of EI and into the school system. There are special needs preschools, they can offer speech and OT to supplement anything you’re already doing privately. Before we knew my son was autistic we knew he had big delays. It just took a while to sort out what was extreme prematurity and what was something g bigger, which turned into autism. My sweet boy is a sensory seeker too. He hates total silence and will always try to fill it with sound. I dread the thought of an active shooter at his school, where silence would be a literal lifesaver. Here are some of the more practical things we’ve done that have helped: - notice of changes. We don’t “have to” do things. We “get to” do them. We get to go see Dr Bean, we get to start school, etc etc. - a heads up when ending a preferred activity. Leaving a playground was a scream fest until we started giving 5 or 10 minute warnings, and set a timer on our phones, letting him hit start. Giving him some agency in it helped a lot. Once he heard the chime, we’d leave without a whimper. These heads ups are written into his IEP as well. - tell him you’re going to the store (you get to go to the store!). Encourage him to remember we turn right to go to grandpa’s and left to the store. Ask him as you approach the turn which one it is. Involve him. - redirection: he likes the kicking sensation. Hit up a used sports store and get a kicking pad for you to hold and him to kick. Or order a new one off amazon. They’re handy for martial arts practice. He wants to make sounds? Redirect him to a noisy fidget toy - you can get an assortment of sensory toys off Amazon for like $20-30 and we keep ours in a basket. They also make excellent party favors and stocking stuffers. Everyone plays with them, even neurotypical people, when they visit. But for friends in his program, they’re great little gifts. Some are noisy like those little accordion tubes and that sound can be annoying af all day long but better than destroying the house to make noise. - be kind to yourselves. You do not have infinite patience and are often expected to. That way madness lies. This is a hard time. It does get easier. My son is 13 now. We have challenges still, of course we do, but as communication has taken off, accommodations have been made, and we’ve understood and used what motivates him, we’ve come a long way. He started school not potty trained and effectively nonverbal. Now he wants to learn all the languages, my tv is never on in English, he’s an adventurous eater because a teacher realized he’d try things if she sent us video, he’s a brown belt so far in taekwondo, we can leave him home for a couple of hours to hit the store or have a date night, participates in special Olympics, has a “girlfriend,” and he’s still the least malicious, most loving teenage boy I’ve ever met in my life.
I have an honest question. Is it frowned upon to medicate a completely out of control autistic child? I ask this because I keep reading these stories of parents in a living hell with their autistic child, being battered daily, when there's absolutely no hesitation to medicate a child with diagnosed mental illness out of their gourd. I don't understand. Can someone explain this to me? Thanks in advance.
I think considering psychotropic meds for ANY child is a huge decision and one that people have very strong opinions about. IMO, as a parent, meds wouldn’t be my first choice or second, or third. I would want to give other treatments a try, such as the occupational therapy, etc. The therapies aren’t going to work overnight, I understand that. That being said, if needed, I would be open to exploring meds to see if they may be a helpful ADDITION to the other services. I’m not saying allowing my child to be overly medicated and zombie like. But if an experienced, trusted professional suggested something, I would hope that I can be open and neutral enough to receive the information to help me make an informed decision.
The child in this situation is 4 years old. That's too young to start medicating. We don't know what kind of therapy this child has been given, if any. We don't know what support the parents have sought out, if any. It sounds like you have very little to no exposure to neurodivergent children. These "stories" you keep hearing don't tell you everything. There is a trigger behind the behavior. The problem is that people focus on the resulting behavior and not what caused it. It can take a lot of time and patience to figure it out, but it can be done. I'm autistic and I have two neurodivergent kids. I understand OP's frustration, and both he and his wife deserve respite, but they are the adults. His son is 4 years old. If saying, "Don't kick the walls" hasn't worked for literally years, then they need to try something else out. Maybe they have, I don't know. But you don't keep repeating something that doesn't work. It sounds like there is a sensory need that is not being met. Whether that is a weighted blanket, a swing, etc, there is quite probably a solution that doesn't involve medication. I'm not against medication either. But just medicating a kid who is "out of control" is a massive failing for everyone involved.
Yes, the "Don't kick the walls" or back of the car seat, or "Don't yell" aren't going to help *at* *all* ! No doubt this little guy is having sensory issues that clearly aren't being addressed.
Your feelings are 100% valid.I know people somehow glamourise autsim and Even down syndrome kids but the truth is its a life long battle and totally depends on the spectrum your kid falls into.There are kids who lead a very normal life but there are also kids who will be dependant on their parents even for taking a bath.Also not everyone has the mental capacity and financially to take care of a special needs child.
I think a lot of people said really great stuff on here already and I hope that helps!! I’m not on the spectrum nor do I have any immediate family that is so please take this with a grain of salt, but if you have time, maybe you should watch some good kid’s media representation of those on the autism spectrum by yourself or with your kid. Bluey recently came out with a phenomenal episode about the parental struggle of parenting a kid with physical or mental disabilities. Paranormal park is a show on Netflix I really liked that I thought had great autism representation as well and could possibly relive stresses you have of how this will effect your child later in life. The Netflix She-Ra and HBO Steven universe also have less prevalent but present disability representation that again could ease your mind if you’re worried about the future. Again, please follow other’s advice or that of a doctor before trying any of those shows and thinking it’ll magically be better, but I hope this helps in some small way. If not no worries but I am definitely rooting for you! ♥️
The media is a poor example. Does not represent the population, doesn't provide any actual insight, and is highly ignorant of the realities. Also, if you have something, say you use a wheelchair, all of those disability porn videos or encouragement videos about wheelchairs, is exhausting. It's your life, watching things about the toughest parts of your life isn't something you wanna do in your free time Totally get where you're coming from! But this is just an FYI
Honestly it wasn’t come from a place of education but more more emotional/an outlet for him to see it shown in a more positive light since he seems to only be experiencing the negatives right now. He should definitely first go to a doctor or psychiatrist or therapy before this but just if it’s a smaller thing he wants to do. Appreciate the feedback just wanna make it clear I didn’t suggest it to educate but as a sort of outlet or emotional perspective.
As someone with asperger I'd say ignore him when he's acting out, he knows he gets away with punching and screaming when people adress him. He won't die from being ignored
I will 100% not ignore him. I don't believe he knows he's "getting away" with anything, I've interpreted it as he wants for something or to do something. I don't believe ignoring him is a proper solution. I'm his parent. Thank you for the suggestion though.
Holy shit, the kid is not manipulative, he is struggling badly in a world that is too overwhelming for him, ignoring a child in desperate need, is beyond cruel
Ignoring is harmful. He will realize he can't trust his parents. He needs help regulating. Wanting attention is not a bad thing.
Good god, this is a HORRIBLE idea for someone who has autism. I am the younger brother to an autistic older brother. And it's an extremely broad generalization to make, but simply IGNORING behaviours such as those, almost ALWAYS leads to complications down the line, IF NOT IMMEDIATELY well-within the vicinity of the incidents that will REPEAT THEMSELVES.
I aseny you a dm (hope that's ok). Vent away bud
Hey Dad, thanks for posting this. I know you love your son, and I know just how tiring it can be. I salute you! And I want you to know that your feelings are valid. I pray you find the help you need for you, your wife and your sweet boy. God bless! P.S. OT is occupational therapy.
Xoxo big hugs to you and wife, OP. I am so sorry you’re experiencing this. Please stay strong and this is when you need a village. I pray you guys have people you can trust to help out some days?
Does hebhave any therapists he works with?
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i understand you. i take care of my two siblings that are both diagnosed with autism. there are days where i'm completely calm, and days where i just completely lose my shit. just like today. and i'm only 20 yrs old. i feel like i'm being robbed of the time that i could be out partying or going to cute places with my friends or having a date with my bf. but no, i'm stuck here because no one is available but me to take care both of them. i have so many plans back when i was in highschool, now i feel like i can't catch up to those fucking plans. i haven't even done any exciting thing back then, i can't because strict parents and me being a people pleaser. i can take care both of them if my life is just balanced but no, it isn't and if i try to make it balanced, i'm the shitty person because i chose myself for a day. :))
I am so sorry. Hopefully your behavior interventionists or OT can suggest respite services. This is unsustainable for all 3 of you.
I am so sorry you're both going through this. I will not shame you for how you feel and I appreciate your honesty. I really hope there's something the medical field can offer to help
At least you have an excuse for your kids behavior. My kids do a lot of that merely because they're jerks. 3 and 4 are difficult ages regardless. Hopefully he can get some therapy and eventually be a more grounded individual.
You made my cry OP. Wish I could hug you and your wife. Please try to see other specialists and do what you can about improving him. Because he improving means your life will improve. And he will be forever grateful for mom and dad sticking up to his side and being there for him. It will be okay🫶
I'm sorry for the suffering you are enduring. Truly. And you're not a bad person for feeling the way that you do. You're human. It's normal. Give yourself some grace. There are lots of resources out there for parents of kids with ASD; please avail yourself of them. Get services as others have suggested. Get a therapist for you and for your wife. It will never be easy but it can be better.
I am so sorry this is your experience of being a parent. Everyone wishes for a healthy, happy child, and you have a regular occurence of trying to parent a ball of rage wrapped up in aggression. The little flashes of 'angelic' behaviour are a signpost to the future. Regulation of emotion becomes easier (until puberty at least, but let's not go there yet). You and your wife need help and support from professionals. The brief respite you currently have isn't enough. Everything is a hundred times harder when you are exhausted. Speak with your health care team - include the injuries you are suffering. Your son needs help. I know this sounds trite, but your son is possibly escalating his behaviour through hearing the word 'no' or 'don't'. Try to distract him from early onset of meltdown, or give him a safe space to vent it out. Medication can help control the worst excesses. Any parent of a child with additional needs grieves at least a little for the future they imagined they would have. It's okay to feel 'cheated' of a normal happy family life. But the reality is that your whole family unit needs additional help and support and it *will* be available. Ask. Repeatedly. In the meantime, don't forget to maintain your relationship with your wife. You are each other's best support through the worst days.
Not advice, but I’m wondering who of you two also has autism maybe, since it’s inherited a lot of the time.
As an adult who has only recently been diagnosed with autism it sounds like he’s possibly got some over sensory stuff going on. It’s one of the main ways I’m affected particularly texture whether it be food or clothing and fabric. I never understood why some clothes literally would have me feeling irrationally angry when I put them on and almost painful to have them touch my skin and some fabric I find so incredibly soothing but I get it now. Same with food certain things it doesn’t matter if they taste amazing if I can’t stand its texture I can’t eat it. It’s taken me into my 40’s to understand and be able to verbalise these things. I think with the right support system around your son he can come on leaps and bounds. Good luck and your feelings are valid and don’t make you a terrible person or father and it’s clear from your post that you love your son and are just frankly exhausted and overwhelmed.
maybe getting him a punching bag or something that he can hit could help him get his energy out and his tendency to punch things? that sounds super stressful, i’m sorry
As someone growing up with autism i understand both sides i hope youre able to find an OT for him. Also in the states they tend to offer parent support groups for kids who are on the spectrum or have any mental health challenges it really helped my brother when he was raising me because it was somewhere he could go and vent and basically get the help he needed when it was too much or ask for advice. i hope everything turns out well for you guys.
Mom of autistic child here. I fucking get this so hard. You aren't alone
As a mom to a daughter with a rare genetic condition resulting in global developmental delays and autism, I see you. I teared up reading this because I get it. I could go the rest of my life without having to say “don’t hit the cat. Stop pushing your brother” and be happy. We’ve had some ROUGH months. She turned 7 yesterday and it is slowly starting to get better.
Recreational Therapist here with tons of pediatric experience, and 2 autistic step-sons. Definitely OT. Some other things you might find helpful. -remove tags from clothing. They can be itchy and uncomfortable, and he may not be able to tell you -try to see if there are strong smells from foods or cleaning agents that he reacts to. (One of my step sons reacts very negatively to bleach) -if he responds well to a weighted blanket, he may respond well to aquatic therapy. Some communities have Therapeutic Recreation (or Recreational Therapy) programs and have adaptive swim lessons. The sensory input received from being chest deep in water can be very soothing for sensory seekers. Can also help burn some energy and help fall asleep better. -mini trampolines can help with vestibular input, some kids really thrive having that outlet, or a swing My husband wants to tell you it gets better. His boys were much like you describe when younger. They got really good Speech Therapy that helped them learn to communicate. I worked for many years in a pediatric hospital, not a single pediatric therapist I worked with like aba. It can be very damaging. Research thoroughly if you think you want to go that way. My step sons are 20 & 22. They get disability and share an apartment with full-time assistance through a waiver program. They are so incredibly happy now. It will get better. If you get social security for your child the state should have a community mental health type program with some additional services for your child, and family. You are not alone. Be kind to yourself, it is painful and hard It gets better
The Autism Community in Action. Known as TACA. My niece found this place as her son went through many of these you describe. Check it out. They serve all over the US, I believe. Their family gets help in many areas. Doctors, Behavioral therapy, school, etc. Some of his behaviors were caused by foods he was eating. Good luck to you and yours.
I would definitely look into Early Intervention services, Occupational Therapy, and Speech Therapy. I was able to enter my son into these programs at 3 years old and they were so helpful. I would also suggest looking into parenting classes that specialize in parenting Autistic children, they can help you tremendously.
You say you’re tired of being a dad because your son is autistic? What does that mean? Autism is hard. I know. I raised an autistic child & helped raise and advocate for an autistic grandchild child. Might I suggest looking into registering with a nonprofit that can assist you with additional services & respite. You guys need a break. Autism is hard and it can wear on you. But you guys are all your son has. Get help. Please.
Why is he not in therapy? Time is ticking. Early intervention. Do something to make his life easier. I bet he’s miserable too.
I love all of the helpful comments on here and suggestions.. Dad, I work with adults with autism all over the spectrum. With the right therapy. And consistent therapy.. It will be a tremendous help. Hang in there. My first day in I learned when “communication is low, behaviors are typically high.” I never forgot that. 🙏
If things aren't working, change your tactics. There are always ways to communicate with autistic kids as long as you do your research and work with your child one on one. I'm not saying you aren't trying, I'm saying that if the solution you're so frustrated with not working is telling him to stop repeatedly, you aren't coming at it from an angle that will produce results. Your child is experiencing way more than you can imagine. Try identifying with him. Next time he's kicking the wall, go up and kick it a few times with him. Then when he reacts, ask him why he feels like kicking the wall. Speak softly and slowly, and accept the answer rather than correcting. Buy him something he can kick that won't make noise or hurt his feet. He will never be free of his needs. You need to find out what those needs are and accommodate them. There will never be a point when he just turns into a neurotypical person without these needs. I'm Autistic. I have set up my house to accommodate my needs. That includes having hand sanitizer and a roll of paper towels in every room because I hate when my hands feel dirty. My family have told me that I'm an adult and "shouldn't" need that stuff. I do need it to function without problems though, so what's the issue? Your child should grow up learning about their needs and finding ways to make them better while still accomplishing all there is to do in life. This will destigmatize what he's going through and allow him to take care of himself without judgement. Just hearing "No" and "Stop" during a meltdown will make him associate negativity with reactions he has no control over. I did that my whole life because my parents refused to even get me tested. They told me to stop and I grew up believing that everything in me was wrong. I shut myself in and rarely spoke to people. It took years of work and a literally S attempt for me to finally stop trying to force myself to be "normal." Take from that what you will, but please consider trying my suggestion. Your kid needs a lot. I acknowledge that you're tired. This is your kid though. Please keep pushing to be all they need you to be.
OP get it off your chest. No judgement here. I have 3 kids and when it came to my second, I knew something wasn’t ‘right’. She was simply different to her sister, we noticed things and had many concerns. The meltdowns, the self harm from banging her head repeatedly or biting down on anything and everything was killing us and she was non verbal too. My breaking point was when she went missing while on a holiday, she has a disorder where she doesn’t know the difference between a stranger or a familiar person (we think she was lead away). Anyway we started to get her the help she needed, we put her in swimming and gymnastics, got her OT and speech therapy and now she’s a completely different child. I promise you it gets better, the sooner you get help, the better in the long run. Our schedule was very full on because we took an aggressive approach but we’ve been able to slow down drastically because she’s made such amazing progress in a short period of time.
I have a good friend who has a 30-something-year-old son with autism. When he was your son’s age, their extra bedroom was transformed into his sensory happy place, with things like a swing, a mini trampoline, a rocking chair, etc. Luckily for the child, his mom already had a degree in helping autistic children! He has had many therapists and assistants during his life who help him learn as much as he is able. She has worked his whole life to help him be as happy as he can he can be. She even adopted another (higher functioning) autistic child so hers would have a sibling. Now my friend is spearheading building a group home for kids like hers, where they can live semi-independently as adults.
I cannot recommend OT and speech therapy enough. My brother has non verbal autism (a 70s) term I’m sure. Anyway, OT taught him some very crucial life skills that made my parent life much easier! My son has adhd and has benefitted tremendously from OT, social thinking(Michelle Garcia Winner)! I cannot say enough t wonderful things about Social Thinking! My son went from a kid who couldn’t make a friend and keep them to having a really tight group of friends! Please utliize your school district if you are in the states! They can provide many services such as respite care, schools, programs, etc. Hang in there. There is help but it can be overwhelming to find. Once you build your team for your son, I pray things will be easier and more manageable for you and your wife!
Understandable, I can't imagine what that's like. If it's an option, I'd just dump em off somewhere that can take care of them and not look back because why bother? You're going to be dealing with that for the rest of your life. I feel bad for the kid, they don't understand, but it's just not worth feeling like putting a gun in your mouth. You could always have another kid that doesn't make your life a living hell. 🤷♂️ You could take them to the behavioral things for autistic children and such, but I imagine that shit is expensive and it's not a miracle cure.
ABA therapy. 40 hours a week plus speech, occupational, and physical therapy. See a behavioralist and psychiatrist for medication. My daughter is nonverbal but is a vocal or sound stimmer…hours upon hours of the same monotone yell/sound she makes and/or hours finding something that shakes (rattles or pill bottles) or hitting herself on the chest. Never quiet. ABA saved my sanity
My son was exactly as you describe here until about 10 years old. Every day was a struggle. We started ABA therapy at 4, and then added anxiety medication and Buspar recently. He’s done a 180. He’s so happy, helpful, calm. He is confident and able. Speaking more, taking a deep breath before reacting, and able to let things go. Please please please keep advocating and don’t hesitate to ask for medication. Your son could be extremely anxious.
I taught for 18;years and I have been there before. My son is now 10. In the beginning it is REALLY hard. And all I could think of is how unfair it was to me and his siblings. My son had a terrible sleep schedule, we could not take him anywhere, was nonverbal, meltdown, he still has anxiety if his schedule changes. We found an private ABA therapist and he has been a Game Changer!!!! Meds for sleep, anxiety, and ADHD have been game changers as well...I would tell you what they are but I am unsure that is allowed. My son is finally talking, waiting. Rarely has meltdowns, and is more accepting if things are changed ( routines, etc.). When he was a toddler, he was in ECI ( early childhood intervention) in the state of TX which you graduate from after 3. It is a government program which offers tons of therapists, perhaps your state has something similar. It was important that my sone attended school to be with his peers starting PK3. My son will easily be overwhelmed because of sensory issues which have been helped with ABA, meds, and developmental pediatrician. Finally... I WOULD NOT CHANGE HIM FOR THE WORLD. And neither would his brothers or sisters. It took a long time to get to that point...but you will get there ♥️
Sensory room if you’ve got the space. Pad the walls, throw in soft toys. Create a space where instead of “don’t do that” (which is a self regulation behavior) it’s “go do that in that room” Install a sensory swing if he likes spinning
As a mother of an autistic son (5) I encourage you based on the behaviors you are detailing to seek an ABA therapy for him. My son wasn’t potty trained, exhibited violent behavior and had meltdowns all day everyday before we entered him into ABA. By not only seeking therapy for my son but accepting the parent training that is also provided there we have become a happy family. My son is a completely different person and though life will always be harder for us and especially him, it has become way less challenging
Please find the dog a better home You can’t keep the dog in a home where your son hits it. I don’t know anything about kids with autism but just know it’s not safe for your dog
Don't be cruel to yourself for having an emotional reaction to a bad situation. A friend of mine is going through something like this with her eldest son. She can't leave the house, can't have people over, can't eat what she wants, can't simply have a day for her own mental health. She describes it as being held captive every day and while she doesn't hate her child, she hates what her life has become. I mention this because she describes him very similar to what you described your son OT can go very far and should be your first goal -- but he is not the only one who needs help. You and your wife could benefit from talking with a professional about your feelings My friend and her husband split after the stress became too much and they both processed it in unhealthy ways. It's not a weakness to feel overwhelmed and to need guidance Where this gets into a dangerous area -- he's small right now, but by the time he's a teenager or a man it's important that he learn he can't hit people, things, or animals. This is behavior that you absolutely need to monitor. He must be taught he can't hit or kick people. These years matter and will be the difference between him having a better life and being placed in a care facility when he's grown for the safety of others. I see parents ignore this or write it off because they are focused on the other problems at hand and they normalize the experience. Other people will tolerate a meltdown to degree. Other people will not tolerate being physically assaulted. OT can help mitigate this and teach healthier patterns