WHAT HAPPENS NEXT is a sweet book, and quickly moves through the years of raising a son with autism, and wraps up the book with some very helpful and concrete information about just that: what happens next. What do you do when your child "ages out" of the system? What do you do when you need to make hard choices about guardianship, SSI, Medicaid, Special Needs Trusts, housing, employment? All of those fun things that haunt my every moment.
I know I'm not the only one that feels the responsibility, constantly, and I do mean constantly, of having a child that will forever be a child, long after they are an "adult." The whole thing totally overwhelms me and drives me straight to the chair-and-a-half with Flicka and the iPad. I would prefer to lose myself in Solitaire, than delve into all of this, but I know it's right around the corner for us. Rojo will be 16 in July, a lot of this needs to be handled before he turns 18. We all know just how slow and bureaucratic "the system" can be.
The book was helpful to me on many levels - it's comforting to know there is a roadmap and to have it shown to me. It's comforting to know that for at least one family, it was navigable. It's comforting to know that I am not the first and I won't be the last - in fact, the numbers coming up behind us are exponentially higher than those that have gone before.
We are not alone.
2 comments:
I love that they found you, Carrie! And I love that someone has gone before you and done some of the work, although I suspect you'll still be a trailblazer for many.
I don't envy you this process, and I think hanging out with Flicka and Solitaire whenever you need it is just fine.
Love.
It is sad that the number coming up are so high...and so many people don't know that. Good job for this post, and for helping others who need to know about a book like this.
:)
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