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| If only the brain had an off switch... |
You all probably have read about the policeman in Florida who shot a caregiver of an autistic man, and explained he was actually aiming for the man with autism, and missed. (link here) There's a lot to process there, but my mind went to the many times Janey's lost it in public. I can picture her trying to hit or bite a caregiver, or Tony or me or her brothers, and what it might look like if a law enforcement officer came across the scene at the height of it. I think she's a little protected just by being female, because right or wrong females seem to be seen as less of a threat, but still...my thoughts are not ones that are easy to think.
My friend Michelle and I have joked a lot that we have to live forever. And the joke is partly a way to not face the reality that we won't, and that some day, our children will not be in our care. Both our autistic daughters have two siblings. For those siblings, the knowledge that they will likely someday play at least some role in Janey's or Lindsey's lives---I won't speak for them, but I am quite sure that knowledge plays a role, if even subconsciously, in their life planning. But the alternative, a group home---well, that is something I try not to think about. I am sure there are good, even great, group homes out there. I know there are. But there are others that are not as good. This article (link here) about group homes in Massachusetts was not an easy read.
Janey's current psychiatrist told Tony and me in very clear, certain tones that Janey is at extremely high risk for abuse. I feel like throwing up every time that thought comes into my mind. He said girls who are non-verbal have a rate of abuse that is so high that it's almost a certainty. Well, what do you do with knowledge like that? I have to feel glad, here, that Janey lets people know when she doesn't like what is being done. I want her to keep that voice. The other day, for some reason the word "tap" came up in a conversation Janey was listening to. Immediately, she said "tap" and tapped her head. I know that is something taught in ABA. I know the reasons for that kind of teaching, but I'll be honest---it was a bit troubling to see. Do we really want our kids to respond instantly when told to do something?
I am lucky. I feel as close to total confidence as I can feel in Janey's schools. She is safe at home. She is loved and cared for. I wish I could simply close out the worries, the fears, the thoughts. But I can't. I don't think any of us who love a child with autism can.
