You won't be his babysitter when he's 24. At that point, if he can't (partially) look after himself, the best thing to do for his best interests and yours is to put him in a group living home. You won't be able to control him at that age, and if he were to ever physically over-power you it would be bad news. But that's neither here nor there, because that's a LONG way off and it's too soon to judge where little E's life is heading. You never know when his development is just going to spike and suddenly he's capable of a lot more than you ever thought. Just do what you can today to get through today.
Your other son will be a big help in E's life as they get older. My brother moved in with me when he was 21 - we lived in the same student housing in University. I was able to watch over him as he slowly gained independence in a very controlled environment. I've always been very involved with helping my brother and that will never change. As long as both your children know their mother loves them very much then I don't think your eldest child will feel neglected. Siblings want to help one-another, that's what we're here for. As they get into their late teens/early 20's it will probably become something he WANTS to do - help his little brother out.
Navigating the US medical system isn't a fun task. They REALLY don't want to let you know what's up for grabs - which shows how cruel they can be. Services like this wouldn't be available if people didn't show clear need. Do some digging and make as much noise and fuss as you possibly can - you really have to be your childs advocate with stuff like this, because sometimes it feels like no one wants to do anything to help.
Why can't you move and support yourself dancing? Would probably free up a lot of time and give you more dough to spend on medical expenses (and it sounds like a lot).
Good luck with the bedtime dance! Don't feel guilty - you're not a dumb-dumb! Someone mentioned Jenny McCarthy earlier in this thread. I know she's a big inspiration to mothers of ASD children everywhere, but sometimes people like this can frustrate me! They're all "Coach your child constantly! Talk to every medical professional you can! Moniter their diet! Have a strict schedule that doesn't allow for ANY free time! Never get angry! If you don't do all these things then you're to blame if your kid doesn't improve!" It's too much to live up to! I mean - who are they kidding? Of course a Gluten-free diet would make improvements to an autistic childs temper - it would help lessen anyones temper! But how much extra work is that? To monitor diet exactly? No sugar, no gluten, etc? While trying to clean a house-hold, and work, and have a life and look after your children. And to schedule every single second. Literally no free time? It's not possible, because it essentially means that you get no free time. It's too much, and it's not possible. And sometimes you just want to say "I could do it, but I just don't want to put in the effort. I need a bath. I need to sleep. I need to have some intimacy with another adult rather than sit here planning out consults with doctors and planning a never-ending activity schedule".
I get it, I saw my mother go through it. I saw her cry in guilt when people were telling her she could do more. They were wrong though - if she had done more she would have completely given up on herself, and her health and her life and her passions. She needed to be healthy and functioning if she wanted her children to be. She worked with my brother a lot and I think she did a really great job. So don't feel guilty about being frustrated. You should feel frustrated.






best wishes

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