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Saturday, May 5, 2012

Direct Services---that's what autism needs!

This article is something I happened upon, and it made me wish I lived in Jacksonville! I just recently figured out the term for what I think is desperately needed---direct services. If I am correct, it means services that directly aid children with autism---not money for research, not money for awareness or walks for some small portion of the "cause", but real services---respite, recreation, camps, after school programs, buddy services, sports opportunities, things like that. I am so lucky that Janey is in a great school with a great after-school program, but I still wish for more. Janey loved the Irish Step lessons she gets at afterschool. I wish she could go to more lessons---real swimming lessons, not just an open pool, a day camp, gymnastics lessons, all kinds of things. Things that "regular" kids can do.

The other part of this is that I think there's a lot available I have no idea how to find, or that is available only to certain richer communities, or certain religions. A wonderful resource would be a person (or guidebook or website) that brought together all the actual direct services out there. I think sometimes places that have a program avoid advertising it too much, for fear of being overwhelmed. I can get that, in a way, but on the other hand, it bothers me, if only in that is shows how desperately such programs are needed.

And there's the question of quality. I never want to put anyone or anything down here, so I won't get specific, but one sports opportunity we tried just wasn't safe. Janey was repeatedly being assaulted---pushed over and hit--- by a boy bigger than her, also autistic. I don't blame the boy. He wasn't being supervised, by his father or by the staff. And they were frankly overwhelmed. It was a mess, and we decided to just stop going. I don't think most families would tolerate that kind of situation for their "regular" kids, and I see no reason they should for their autistic kids either.

I am so lucky in what Janey does get to have at school and afterschool that sometimes I feel like I'm being greedy in wishing she was able to get more, and maybe for right now, she is getting enough. But she won't always be at her school, although barring miracles, she'll always be autistic, and there are many, many kids like her. I hope that some of the wonderful giving that people do to help autism will get directed to programs that will directly serve our great kids!

1 comment:

Kim said...

We get direct services through the's part Of "waivered services" have you checked there?