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Sunday, March 18, 2012

A book that set me thinking

I just finished reading a book called "Reasonable People" by Ralph James Savarese. It's a memoir about his adopted son DJ, who is autistic and also went through much trauma in his early years before he was adopted at age 6. As often happens when I read a book about autism, it set me thinking. Their son learned to communicate using Facilitated Communication, which I had thought was pretty much totally debunked. It's when a parent or someone else holds a child's hand (or later on their arm or shoulder or so on) to help them control their movements, and the child types. I am quite convinced from all I read here that DJ was doing the typing, and that he was very bright. He didn't start FC until he'd had a very lot of reading taught to him, unlike some cases I've read where kids started doing it out of the blue, which makes it seem like it's someone else doing the typing. Some autistic people learn in time to type on their own. I still have a lot of skepticism about anything I read about autistic children or adults somehow being "unlocked" after having had so many thoughts over the years they have no way to convey. Maybe that's because it's too heartbreaking for me to think of. Is Janey understanding all we say, but can't let us know? I know that sometimes with the iPad, if I lightly hold her hand, she is able to do things she couldn't otherwise. I am quite sure I am not directing her hand. Her teacher told me she can write a "J" this way, and I've seen her do similar things. I just don't know.

The book also made me feel like a slacker, as so many books about autism do. The parents were endlessly devoted to DJ, who was very tough at times. The author was an "overthinker", as a friend and I call ourselves when we think about everything way beyond what most people do, and the author did address the fact that they had resources, money and time beyond what average people do. But still, they were far more hard working at getting DJ up to speed than I feel I am. I think part of it is I don't know what will work with Janey. If someone knew exactly what would help her most, I'd do it day and night. I really would. But I don't know, and I'm not totally convinced that anything would greatly speed up her progress. If I went with my gut, I'd feel that the most important thing for her is to be accepted by us, her parents. She is going to deal her whole life with a big world that will see her as odd at times, as unworthy of respect perhaps. I want her to have a happy childhood. I want her to have time to explore outside, to listen to music, to be silly. But I don't want her to be unhappy, and she is, too much of the time. Is this because she wants to communicate more than she can, and I'm not working hard enough to give her the tools? When I read about how other people approached autism, they always seem so confident they are on the right track. I am not like that.

Anyway, it was a very well written and thoughtful book, and I would recommend it. Any book that makes me think as much as it did is doing the job a book should do.

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