I got him to go back and sit down easily enough, but then I made a serious error in judgment when I asked Aliza to go back there and see if she could get his seatbelt rebuckled. I foolishly hoped - in the back of my mind I knew it wasn't likely, but I hoped - that if I paused his video, he'd be able to let her do it. We were crawling along in heavy traffic on the freeway in Minneapolis, there was nowhere to pull off the road. So I took a chance and asked her to do it.
And after a short struggle that included me watching in the rear view mirror and uselessly ordering Zack to cooperate, he bit her in the thigh. And she screamed.
I can't believe I made her do that. What was I thinking? He hasn't let her do anything like that to help him in weeks. He's very aggressive/defensive toward her lately. Toward everyone, really. I don't know why I thought that might work.
He screamed and cried. She screamed and cried. I told her to come back up to the front, which she did, and Zack stayed put. He knew - oh, how he knew he'd done something bad. In between sobbing and screaming, he would sing a few words of the tune from "Pluto's Bubble Bath," his current favorite Mickey Mouse Clubhouse episode, trying to comfort himself.
After getting everyone settled back down and traffic loosening up, I got over into the carpool lane and burned rubber. We all wanted to get home.
The new anxiety medication isn't doing much of anything, so far. I emailed the doctor Thursday. Within a couple of hours we had it all worked out to increase the dosage. I am so lucky to have associations with doctors and nurses who know me, and who respond immediately when I call or email.
It wasn't just today. Every therapy session Zack has had this week ended with a tired looking therapist walking him out, shaking his/her head and saying "that didn't go very well today."
Just like during the Arbaclofen trial I constantly wondered, how much of the boys' progress was due to the medication, I now wonder, how much of Zack's troubles lately are due to the Arbaclofen trial ending? If he were still on it, would he be having all these anxiety and lashing out problems? His usual summer sensory issues have been greatly lessened this year, I think due to two things - the swimming pool in our backyard, and the fact that it's been a cooler, less humid summer.
I have to be so careful what I try and do with Zack. Where I try and take him. I don't dare go anywhere where there will be very many people. The other two get bored, staying home all the time.
There have been a few stories lately in the Fragile X group of families who have had to resort to putting their children in a controlled group home setting, when their aggression/sensory defensiveness became more than their parents and caregivers could control. These stories scare the crap out of me.
They all say that it's one of the toughest decisions to make, which I can certainly imagine. I know we aren't at that point, but I am afraid it could arrive. I read these stories and I see parallels in the descriptions of these kids' behavior, and Zack's. I think about it whenever Zack attacks his sister, or bites me. Luckily he's not that big, yet. He's not that difficult, yet.
While it's nice to know I'm not alone, sometimes the way we can share in each others' stories and relate to each other is frightening.
Not only would it kill me to break up the family this way, but separating Zack and AJ would be beyond tragic. They adore each other and lean on each other. They worry about each other. They are like two halves of a whole.
We won't do it. We won't ever do it. I have to promise myself that.
We've got to find a medication that helps Zack. Desperation is setting in.
|Aside from trying to pinch the therapists and volunteers, Zack did pretty well at horseback riding last night.|
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