3 ms·
This is something that I think about frequently. I have 2 children with autism. One is fairly high functioning, the other is not. The reality of his future w
by jasonlotito 12y ago
This is something that I think about frequently. I have 2 children with autism. One is fairly high functioning, the other is not. The reality of his future weighs upon me. He is still young, only 6, and I love him dearly (both of them). He is a happy child, affectionate (a rarity for autistics), loving. I dread the day we cannot properly care for him. The reality of his situation, of what his life will be once he gets older haunts me. I fear that life will eventually take that happiness from him, and he will not understand why. He stims, and recently it has started to cause bruising. Not much, and not frequently, but enough that I worry.
I don't know what will happen when he grows up. I just hope that he will keep smiling, keep being happy. If I can help him keep that, that's all that will matter.
- hoopism 12y agoI live in Massachusetts. A bill was passed recently to help address some of this by establishing a tax vehicle for long term care. It also extends ABA services to kids on MassHealth (which an Autism diagnosis qualifies them automatically). Not sure where you are located. Hopefully legislation like this will be the norm nationwide. http://www.autismspeaks.org/advocacy/advocacy-news/mass-lawmakers-approve-medicaid-expansion-tax-free-savings-plan
- jasonlotito 12y agoI live in Pennsylvania, and the Autism care is wonderful here (which is why we moved from Canada, which has incredibly bad autism "care"). The support we've received has been great. I believe we also have assistance for long-term care as well. Will have to look into that more carefully.
- fecak 12y agoI used to live in PA, and I think the level of care depends on the county you live in. As you get farther from the Philly suburbs your experience may change. Different counties will have different intermediate units.
- jasonlotito 12y agoCorrect. Which is why we live in the county we live in.
- teromajusa 12y agoYou sound like me 10+ years ago. I also have 2 children with autism, one high functioning and the other not. My lower functioning child, also happy, smiling and in his way affectionate, is now 18, 6'3 and about 240lbs. We went through some rough times when he first hit puberty, and he can still have some pretty scary tantrums, but mostly he's a giant gentle loveable boy. So far life has not taken his happiness and I don't see that changing anytime soon. Can't say it will work out the same for you, but I just wanted to say that it can happen.
- jasonlotito 12y agoThanks for this. I know every child is different, but it's still good to hear these stories. I'd do anything to ensure his life is a happy life.