Search This Blog

Friday, March 4, 2011


I am reading "Twin" by Allen Shawn, a memoir about a man and his twin autistic sister, who lives away from home from age 8 on. As often is the case lately when I read books about autism, the main message is not what really gets me. It's a very well-written book, but is mostly about the author and his own feelings. What I am reading avidly for are the little glimpses about his sister and her development. And I always compare. I am always trying to see if Janey is functioning at a level above or below the autistic person in the book. This one especially interests me because it's about a girl. In many ways, she sounds a lot like Janey---she does a lot of echolalia, she doesn't answer questions, doesn't use pronouns well---but she's way ahead of Janey in a lot of ways. Or if I were a more positive person lately, I'd say she gives me a lot of hope for Janey, as she learns to read, do simple math, play the piano, etc.

The depression over Janey has hit me a lot the last week or so. Last night it got awful. It wasn't anything new, just the same old things---picking her up at school, asking her how her day way, what she did that day, all the questions I ask and never get answers for, her totally lack of interest in anyone or anything but her own immediate wants, how she once again took off her seat belt while we were driving, and I have no idea how to deal with that, although she'll parrot back "We NEVER NEVER take off our seat belt" and "That makes Mama angry--it's dan-gous" (dangerous), I don't think the words really mean a thing to her. Sometimes when I ask her what we never do in the car, she's say "Take off our shoes!" with just as much passion. And that is something I've asked her not to do, but not nearly as emphatically as the seat belt. I can't always pull right over---it's like she plans it and does it in the middle of dangerous intersections, which my ride to and from her school are full of. I just started feeling the whole hopelessness of it---the banging my head against the wall feeling that it will never change, I will never get my energy back and be able to do all I should, that it's just not fair. All useless emotions, but what I am feeling. So much for making this cheery for Freddy!


Unknown said...

I read your blog and I care. Just wanted you to know.

Suzanne said...

Thank you, Sue---it helps a good deal to know there are people reading what I write and thinking of us!