This year, it seems Janey has a one-on-one aide on the school bus, both ways. This isn't something we requested, or something in her IEP, or that we were told was going to happen, but we don't have a problem with it. The aide in the morning gets on the bus when Janey does, and the aide in the afternoon gets off when Janey gets off. There's another aide on each bus, for the rest of the kids.
I am not sure why Janey got a bus aide. I don't think she's had real problems on the bus, not that we've ever been told about. I'm sure she has screamed on the bus at least a few times, and bitten herself, because it would be pretty surprising if she never had, but usually she seems pretty calm on there. My guess is that once she even once showed that she could potentially be very distracting to the driver, they insisted on aides. And that is fine.
When Janey gets off the bus, it's usually about two in the afternoon. Tony gets home about five. Those aren't easy hours. I've been trying to figure out ways to make them better, and I've over and over thought about trying to find a class or program during that time. However, something always stops me. I woke in the night last night thinking about it, and I realized I just plain don't feel able to take Janey anyplace in the car by myself any more. I do take her for short rides, once in a while, but the thought of driving any distance with her, just the two of us, scares me very much.
Janey is rapidly getting bigger. She's going through a growth spurt. Along with that, she seems to be far more prone lately to sudden rages. They come out of no-where. Things can seem fine, calm, and then suddenly, Janey lashes out. She lunges at whoever is nearby, she smashes things with her fist, she bites herself, she pulls our hair, she screams her incredibly loud scream. If this happened while I was driving, it could be a catastrophe. If you've ever driven the streets of Boston, you know that it's crazy out there. I am not a confident driver. I need to concentrate while I drive. I hadn't realized it consciously, but the fear of driving alone with Janey is the reason I haven't been able to move forward with afternoon programs.
When I woke in the night last night and realized this, my default emotion was guilt. That's no surprise. That's my default emotion for any situation. But then I thought about the bus aides. Professional drivers, with already one adult on a bus, decided it wasn't safe to drive with Janey unless a second adult was assigned to her. I had a moment I rarely have when I thought about that---a moment of realizing I shouldn't feel guilty.
I read a statistic lately in an article about autism and aggression. It was one of those articles which highlighted very high functioning people with autism, and emphasized how rare it is for autistic people to be aggressive. That's an important notion to get out there, I agree. The article had a statistic I hadn't heard before---that only 7% of autistic people are low-functioning with aggressive behaviors. I wish I didn't have to admit to myself that Janey seems to be falling into that 7 percent. I hope against hope she someone gets over the lashing out. But for now, I have to live in the reality of the present. And I have to keep her safe, and myself safe. Until I can be sure that I can, I need to accept that I'm not going to be driving her around on my own very much. And I am glad the Boston Public Schools transportation department helped me see that.
Rarer in Girls...Life with my daughter Janey, who is nineteen and severely autistic
1 comment:
My son has Autism and is 17 years old. He's been in Boston Public Schools since he was 3. Things are pretty ok here but still here I am on the computer at one in the morning while he is in the next room (thick curtains, no wall between us) not going to sleep. If he keeps it up maybe I'll do the joke where I tell him maybe we need to go out and buy wood to make bunk beds for the two of us. That usually quiets things down. Here's what I am thinking:
Are there times when Janey is left alone and she perceives that nobody is watching or listening and that no one will notice a tantrum right away? If so does she still show this high level of frustration and aggression when alone like that? Does it seem like the negative reactions she gets to her bad behaviors are somehow compelling her to do these bad behaviors? (We are all like that in certain conditions. That's why there are wars and violence and fighting in the world.) Does she mistreat her inanimate object environment in a bad way, like the way she hits the TV, but unlike with the TV with things in situations she does not think you and other people notice and will never involve you or other people?
If she is better alone then maybe it would be good to work your way up to an hour or two alone time for her in a room that is safe and interesting where she perceives, wrongly of course, that no one is watching. Then observe it and use it as a baseline to weed out what causes her problem behavior when in the people world.
If it is the people world setting her off and the negative reactions to her misbehaviors are compelling her to misbehave, then some real quality ABA will be able to at least build a situation where her and her therapists function well in their controlled environment. That would be a place of stability and discipline to build from. I don't think Boston public Schools ABA providers at this time are good enough, except possibly New England Center for Children and I think they don't do the one on one ABA but maybe its just that I am being misled. Its all kind of secret.
My wife and I had Seph, the head of BPS ABA, and ABA subcontractor The May Institute under oath on the witness stand last summer. We do it alone with no lawyer. In some ways our journey is reverse of what you are living. I'll write about that somewhere later. My son is sleeping now.
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