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Sunday, March 27, 2011

Fun for almost everyone

I went to a camp fair yesterday at Janey's school. It was fun to look at the booths for the camps, and talk to camp people about all the fantastic sounding programs. Only problem----none of them would work for Janey, or even accept her. There were a few there for kids with special needs, which I knew she was too young for right now, but I wanted to see about the future. Both of them (one directly, one indirectly) let me know they can't handle lower functioning autistic kids. One of them has a 4 to 1 ratio, the other one, an overnight camp, said that the kids have to be able to follow a basic routine. I can understand how camps would not be able to deal with her. I am not really angry about it, just thinking. In many ways, autism breeds autism. "Regular" kids have endless chances to socialize, to be with other kids, to explore their interests. I could have a "regular" kids signed up for an activity, lesson, camp, etc, every day of the week. I wouldn't, but I could. But for Janey, there is almost nothing. I think the general public doesn't understand this. They see fundraisers for autism, talk about autism, and don't realize that most of that is for specific approaches to autism, for research or for higher function kids. There is not much out there for autistic kids of Janey's level to actually enjoy, to just hang out, and to give the parents a little break. I've looked. I am so lucky to have her in school where she is. If we could afford the afterschool, she's be very welcome there. Until a few years ago, children that were registered with DMR (Department of Mental Retardation) could go to afterschool for free. No more, and we can't swing it. So we have the school day, and I feel lucky to have it. Word is that the summer programs with the Boston schools are being enhanced, and I got a form on Friday to indicate if I was interested in extended year for Janey. YES! But I am not holding my breath, I've learned to never believe it until I see it, not that everyone involved isn't trying hard, but there are so many layers of bureaucracy.

In talking to the camp people, I was also hit with the misconceptions about autism, mainly assuming kids are higher functioning than they are. I think this is different than the past. In the past, people pictured autism as a child in the corner spinning plates. That was probably because it was rarer to diagnose it then, and so those were the children that actually got diagnosed. Now, it's swung the other way. Aspergers is considered a form of autism, and so many kids are also diagnosed as high-functioning autism. There is a BIG BIG BIG difference between Aspergers and autism. I feel qualified to say that, having been a parent to both (at least by diagnosis, in some ways I am very skeptical of the whole Aspergers diagnosis in many cases, not all, but that's another story). Maybe it's not this way for everyone, but I can say for myself, autism is about a million times harder, especially combined with mental retardation. And there are about a million times less opportunities for autism and recreation.

I am not sure how this could be solved. It's a matter of money, I am sure. Janey would really need one on one supervision at any camp or classes, and that is very expensive. I am enough of a believer in self-sufficiency to feel in a way it's not anyone else's job to provide for Janey, just ours. But that leaves the isolation that breeds more isolation. It leads to the feeling that I talked about once in a book review. The only people who should have a low-functioning autistic child are people with lots of money, only the one child and endless time. Others just can't do all they should. Of course, I'm being sarcastic, because you don't get to choose. I am lucky to be living in this time and place. I'm not blamed for Janey's autism, I can send her to school, things could be far worse. But on my less Pollyanna-like days, I think about how they could be far better, too.

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