I just read this article
and really liked it. It said well something I've thought about a lot lately. I would really like to know exactly what is going on with Janey. Does she have more than autism? Why is it so hard for her to learn, even in ways other autistic kids seem to be able to learn? And I don't to know this to look for a miracle cure---I want to learn it to be able to plan, and understand. I want to know what to look for in the future, what kind of education would be best for her, what kind of care she will need for the rest of her life. Someone telling me that would like a wonderful thing, not a miracle, but a wonderful thing.
It's been interesting watching Janey this summer in "summertime school", as we call it. And a little sad, but not all sad. For the first time, she is in a class with all kids with special needs. I don't know what all of their special needs are, but it's obviously she is behind all of them. They are connected, they do puzzles and draw pictures and even write. They know me, and screaming "There is Jane's mother!" Whereas Jane, although she is happy and well cared for and loved there, isn't learning, because she just doesn't learn well. If not totally directed, she stands around, lately spending a great deal of time looking at her hands. At home, most all of her speech now is quotes from "Angelina Ballerina". She often seems less connected than she used to be even. She just sits quietly. She is happy most of the time, but an unconnected happy.
If this is how she is, and this is how she is going to be, so be it. I can accept it. I really can. I've been looking at older kids at the summer school, and I see it's not a bad life. They seem happy. They are not aware of their limitations. They do their own thing, and seem to enjoy their own thing. It's okay. But what if there is something I should be doing---if I am not doing the right thing? I haven't felt that way for a while. Maybe it's because it's almost her birthday. Every year, her birthday gets a little more bittersweet. She is going to 7. Mentally, she's around 2. Maybe less in some areas, more in perhaps words she knows but doesn't use. She's not toilet trained, she talks very little except to ask for things in a basic way or quote videos. She more and more often makes odd noises when we are out, a kind of "awawawaw" noise that sets her apart. She still sometimes runs from me. The years are going by, and not much is changing. And I have probably, in some ways, reached the acceptance stage. She is who she is. If I were sure that was it, I'd be fine. But I'm not sure. What if I had always insisted on many hours a week of ABA, although I've never seen it do much for her? What if I worked with her myself all day every day, intensely? What if I believed Jenny McCarthy, and did what she said? (not going to happen) What if it's somehow my fault, for not doing enough? Or doing too much, or not doing what I was doing right? A million people could tell me it's not my fault, but I don't believe it, in the deepest part of myself.