
It's past 11 pm as I'm writing this. Charlie is still awake; he just came down the stairs and asked for a walk and a little grin spread across his face when we told him it was too late and that, if he woke up early tomorrow, we could go. He had a good day at school -- working on saying full sentences -- and a fast-paced 16 mile bike ride with Jim and then, in the white car, he started rocking fiercely and grabbed at both our arms and screamed.
This, or some variation of this, has happened before; not that that makes it any easier. Jim kept driving, I gave Charlie some supplements that seem to be helping his stomach -- we've noticed that he's made the connection between taking medicine and calming down -- and he drank the better part of two bottles of water.
Leading us to think, he was having thymic distress and he was really thirsty -- things that, despite continued efforts, Charlie does not communicate verbally. I also think he could very well have been -- must have been -- thirsty after the bike ride but his eagerness to get in the car shoved aside his knowing he should get something to drink first. Then distress, panic, catastrophic thinking set in and a long-established need for deep pressure.
There was more up-and-down upper body rocking; Charlie must get some 'pull' and pressure from the seat belt. There were more yowls. Then there was a distinct change in Charlie's voice, a lightening and a loosening, and we knew the storm had passed.
We are glad we were with him to see it through.
Especially as Jim and I spent yesterday haunted after reading about the tragic death of Jonathan Carey and the abuses of individuals with disabilities in poorly managed state centers, as reported in the New York Times. Complaints of mistreatment and beatings were too often only handled internally within New York state's agency for individuals with developmental disabilities as a Care2.com post by Amelia Thomson-DeVeaux details. I think it's fair to say, the abuses are continuing right now.
Indeed, the second thought (the first is below) that came into my head on reading the New York Times article was, this happens again and again. In six years of blogging, it's not hard to regularly read about abuse -- physical, sexual, even psychological -- of individuals with disabilities at schools, in centers and institutions, in the US and, let's face it, all over the world. The UK's National Autistic Society has put up a petition to prevent abuse of adults with autism and other disabilities: Sometimes just signing an online petition doesn't feel as if one is doing too much, but enjoining others to sign it or just telling them about it gets the word out about an issue that most people who aren't personally affected by it often don't heed to.
As for the first thought that came to me after reading the article. It was, what happened to Jonathan could have happened to Charlie.
Charlie has had tremendous behavior issues, difficult moments, SIBs. Now that he's so tall and due to his being so athletic, once he's in behavioral storm mode, things can be extremely difficult. There are ways to address this that Jim and I have become practiced practitioners of such. It takes a lot of self-control, an ability to radiate calm and confidence that we'll all get through it, all while communicating to Charlie that you're going to be ok, it's going to be ok, the storm will pass out of your body and head, it will.
There are ugly, violent ways some deal with such behaviors out of ignorance, lack of training, lack of humanity.
I had written about Jonathan in 2007. Reading about his suffering and his death, and about his parents' experience, made me queasy all over, because the horrors the New York Times article describe happen all over and everywhere, even in what those 'in the know' say are the best places.
All of which is why, Charlie must live with us. There will be a time when he won't and can't and making sure the right kind of place, with the right staff and supports, exists in the not-too-distant-future: I wake up every day and think about this and how to make it happen.
And I wake up every day grateful and relieved to know Charlie is with us, always.
Yes, he fell asleep, just shy of midnight, before I finished this post.
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