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Hello, I am a father that is always trying to learn more.

My son has Autism, he is non-verbal, has a very narrow diet, and he will be 7 soon and has been in 40-ish hours of therapy spread over 6 days and two counties per week since he was 2.5 years old. He now attends some school with about 20 other students, including two that are hearing impaired, and he has a dedicated aide to help him through the day. School is going well.

This has been a very successful 6-months for him as he has finally expanded his diet beyond Cheerios and apple juice, he became day-time potty trained, has started to mimic, and he will attempt to say some words when asked, although he has a long way to go before he would be understood by an un-associated person.

We have recently lost his Medicaid and SSI, so he hasn't received those services since December. I sat in on hundreds of hours of therapy so I am trying to do what I can to help him. We have just gotten a few hours a week of therapy through insurance, but it is very expensive and we probably won't be able to sustain it, especially since SSI says that they want $6,000 back because they believe they overpaid for services in previous years.

It is so frustrating! As if we don't have enough on our plate, we have to deal with these SSI problems, sigh. I struggle with the frustration getting me down, but as we are now about 6-weeks out from that shock, it is getting better.

As we explore more options, we decided to post some videos online of him from years ago to test the waters to see if we could garner a little income from that to help us through this. I am not sure if that will be successful, but it is easy to do while I work on other options.

As I have more time currently because I am not spending a full-work-week taking him to all of his therapy, I have been researching what I can to try and help me to help him become the best version of himself that he can be. I am very encouraged with his recent progress...that he may be able to become self-sufficient some day. I so worry about what will happen to him after I am gone, it is very scary, he is such a sweet little pea!

He has had so made much progress in the last 6-months and I am really hoping that the loss of services don't cause a regression. He has had a great deal of difficulty dealing with the schedule changes, it is a real struggle dealing with the changes, but he hasn't lost any ground yet with the important progress that he has recently made. Fingers crossed!

That is my introduction, thank you for reading! I am excited to explore the forums to try and learn more! Have a nice day!
 
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Hello & welcome @TinyTownFamily .

Unless you agree that your boy isn't eligible for SSI, you should seek out a disability attorney in the matter. Typically, they do not charge you unless they win and then it is negligible. (Confirm that arrangement, first.)
 
Hi tiny, welcome. I also have a son who is very similar other than in diet. He's just about 6 and non-verbal still.
 
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don't send him to a public school in the future !!!!!autistic people are just not designed for it ,keep talking to him we like to talk .
do things gradually ,take him to places gradually so it becomes natural ,like go to the doctor's surgery just let him see it and then leave, go to the dentist do the same thing ,the library do the same thing again .
especially take him to green open spaces, I think we understand them more than spaces designed by humans .
 
Thank you, everyone!

Currently I am still awaiting a statement from Medicaid/SSI as to why he was dropped and SSI has already put me 6-grand in the hole and I can't really take on anymore debt as it is, so I am a little wary of how I proceed. Hopefully I will get some concrete information soon, and I will keep the suggestion of a lawyer in mind as it might come to that.

The school that he is attending currently, I feel like they are very responsive and sensitive to my son's needs. They set up a special room and got him a speech device to go along with the dedicated aids. He is able to request to go to the "bonus room" for when he gets overwhelmed. So far his classmates really seem to enjoy him being in the class and he gets really excited when we get ready for school.

I am always trying to watch and listen, and to constantly re-evaluate my decisions, I want to do what it best for his future. Sometimes I make mistakes, but I am trying to do my best. :)
 
I have a son, with pretty high needs, he's 26, now, not quite like yours of course, it's a giant and variable spectrum. Mine didn't go to school much and, although his speech was delayed, as was toilet training, and he stuttered for some years, and still has slurred and mumbley speech, he talked, although not very clearly, from about three, I think, if I remember right.

I couldn't get any supports or services for many years, as his Dad refused to even acknowledge his son had any needs-based issues, at all, and is still in denial about his son's autism, despite the fact that our son is now in supported accomodation with a high level of support funding and programs ... yes, all my doing, due to the fact that our son got so unwell in his dad's "care". However, I was able to get a lot in place for him, but, only about four years ago.

We live in Australia though, and we have a new scheme called the National Disability Insurance Scheme, which funds high or special needs people.

Unfortunately his dad is some kind of narcissist, if he weren't, our son would have had supports from young, like your's.

You sound like the kind of Dad I would have LOVED to have for my children. However, our son, despite, our, ( and particularly his) disadvantages, is going ok, now.

I did manage to get him a little speech pathology and occupational therapy at age 14, which was helpful.

My point, in all this disclosure, is to reassure you, that even without a high level of outside services, the reality of having such a caring parent, as yourself, will ensure a more favourable future, for your son.

I didn't have much of a clue. I had a lot of children, very isolated, for the most part, and I have autism myself. I used to read to my kids A LOT, after reading a book about a developmentally delayed girl, who couldn't talk and her mum read to her constantly. She ended up learning to talk and became "high-functioning".

Being immersed in a language and visually connected environment, from a caring other, really seems to aid neural/linguistic development.

The fact that your son is in a autism-accommodating school environment is REALLY fortunate!

I feel like Australia is very behind, in some ways, across the educational and health/support industries, we never had access to any such accommodations.

I ended up just keeping my son home, along with his sibs, for years, which, in hindsight, was far from ideal, for social skill development, not to mention other school/academic-environment strengths.

Due to my lack of supports and health, my son developed a gaming addiction/extreme, all-encompassing, habit, at about 14. This is ok, in moderation, but I would caution against enabling this kind of thing to build to excess and with autistic boys, it's a high likelihood, unless, proactive vigilance is practised by the parents. It tends to slow social skills development, although my son, pretty much, taught himself to read from gaming, and now attends an "E-space" weekly program, where he gets together with other autistic boys and they all game on their own devlces, with support staff attending.

You sound like an AMAZING dad!

Your son may develop a whole range of neuro and physical skills later than non-autistic children develop skills, but he will, no doubt, have some exceptional strengths and qualities to make up for that, and even if he needs long-term and high level supports (like my wonderful, darling, son), that is not the end of the world.

Think positively and stay being the proactive parent that you are, make sure you tend to your own needs too, and learn to self-care and carve out time for yourself and your own interests, passions and health and don't give up the battle to get the supports you and your son need!

If I can perseverse and achieve access to supports for my darling son and (eventually) get his special needs addressed, surely, anyone can!

May I say, WELL DONE! You are doing (I can tell) a FANTASTIC job!
 
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I just noticed the picture, your son is adooorrrraabllle! :eek:

He must have been a duck in a past life! ;)
 
I just noticed the picture, your son is adooorrrraabllle! :eek:

He must have been a duck in a past life! ;)

Haha, thank you!

One Halloween my daughter dressed up as a duck, she was around 4-years-old, and we were at a busy Halloween event. We had to walk single-file to get through the place, so my wife lead, my daughter in the middle, and I was last. Well I almost tripped over my daughter several times as she inexplicably stopped as I was trying to look ahead. I later said to my wife, "What is she doing, why does she keep stopping?" My wife replied, "Well she is stopping to wiggle her tail and quack, what do you think a 4-year-old is going to do in a duck costume?" It was noisy enough that I never heard her quacking, and I felt kind of daft, haha.
 
Haha, thank you!

One Halloween my daughter dressed up as a duck, she was around 4-years-old, and we were at a busy Halloween event. We had to walk single-file to get through the place, so my wife lead, my daughter in the middle, and I was last. Well I almost tripped over my daughter several times as she inexplicably stopped as I was trying to look ahead. I later said to my wife, "What is she doing, why does she keep stopping?" My wife replied, "Well she is stopping to wiggle her tail and quack, what do you think a 4-year-old is going to do in a duck costume?" It was noisy enough that I never heard her quacking, and I felt kind of daft, haha.

I think that affected my soul somehow
 

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