Sunday, November 25, 2012

Another Day, Another Book

My mini-marathon of reading autism related books continues.  Yesterday I read "Next Stop" by Glen Finland.  Her son David is an adult with autism (and other issues like Tourette's), and she writes about learning to let go of him---teaching him to ride the Washington DC Metro system, having him go for two years to a training program far from home, helping him get jobs and watching him develop his own life.  I liked the writing.  It's a little old-fashioned in a way, kind of detached.  It reminded me of books like "Please Don't Eat the Daisies"

A couple major thoughts came to mind while reading this.  One is the sub-theme of David's brothers.  Although the author respects their privacy in the writing, I get the feeling that growing up with David was not at all easy for them, and that there still is lingering problems due to this.  The brothers don't seem to show up for major events in David's life much, and although they love him, I think they were scarred a bit by all the attention he required growing up.  They were close in age to David, and I hope the fact my sons are not close in age to Janey helps with that issue some.  But I know there are times they miss out on a lot due to Janey.  I like to tell myself they are learning to be independent early on, and that I am there when they really need me, but I wonder.  I don't know if there is any way to totally keep a sibling's autism from taking away something from a childhood, but I want to do the best I can in this way.

The other thought that kept coming back to me is how in some ways it's probably easier to raise a lower functioning child with autism than one like David.  In a lot of ways, of course, it's not.  But I don't think I'll ever have to deal with worrying about where Janey is when she's off on her own.  I can't really picture a day she'd ever go anywhere on her own, even to the store we can see from the house.  She very rare is anyplace out in public without her hand firmly held by one of us.  I don't think I'll ever have to worry about how she'd doing at her independent job, or how life is treating her when she is away at a training program, or if people on the street are scamming her.  I don't think it will be hard for us to get a power of attorney for her when she gets to be that age.  It's pretty clearcut with her.  She's not going to "pass" for normal any time soon.  I can't even fool myself into thinking she does for a second when we are out in public any more.  It's very clear to anyone that sees her that she is "special" in some way.  And although of course I'd give pretty much anything for that not to be the case, it does make some things easier.

The book is one that needs to be read by those making the policies that will affect the Davids and the Janeys in the future.  There are going to be a heck of a lot of them becoming adults in the next 10 or 15 years, and I don't think anyone out there is prepared.  It's going to have a HUGE impact on society.  Even if we decide every family just has to take care of their own, and as a society take no responsibility, that results in a lot of families with reduced earning power, and therefore reducing spending.  That will affect the economy, if you want to look at things from the most economic way possible.  It might be more cost-effective, in the long run, to provide help for these families.

I'm probably going to take a break from reading about autism for a little while.  I'm a little burnt out of the topic.  But it's good for me to read the books now and then.  I need the perspectives.  It's a big spectrum out there, and we all have something to teach each other.

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