I went to have coffee with some of the parents in our school district last night. Most of their children were not yet five years old and I had to do some imagining back to recall when Charlie was not nearly my height and almost 80 pounds, and wearing the same-size shoes as me. In some areas like reading, Charlie and the younger children are working on similar programs.
In previous years, hearing that a child half the age of my own was reading paragraphs or just reading was difficult to hear, as was talk of scheduling playdates and of a child who could read any word you put in front of him or her. These children still had a full share of challenges, different and similar to Charlie's, but I never knew how to talk about the one thing about Charlie that I hated to mention, and yet felt I had to, if we were ever to solve it.
"My son is self-injurious. He head-bangs."
I was able to say those words last night. I have had a lot of practise, as I have written about this very behavior here on this blog. It is not an easy thing to write about Charlie's self-injurious behavior. I risk sensationalizing him at his worst, of turning my account of Autismland here into a tearful account of one autism horror after another, every day. And yet, not to write about head-banging, screaming, hamburger-throwing, mouth-pinching, etc.: Not to write about these things would be an incomplete, and therefore dishonest, account of what Charlie does, of what our life with autism and our autistic son are.
So last night it was natural to say "Charlie's nine. Yes, he can talk---one and two word phrases unless we push him. He had a really tough time in the past year and a half---he head-bangs. It seems to be getting under control right now, with the school and at home." I did not go on, but thought to myself how we have been doing this in as non-intrusive a way as possible, by trying to understand why Charlie does this and to teach him strategies to address his anxiety before it balloons into Behavior. That is, we have tried to be as pro-active as possible, rather than rushing to react to a head-bang, a screech, a throwing of a dish.
Hence we have begun to teach Charlie to, on hearing an alarm go off, get out of the bed rather than having to be dragged out. As most people are not in the mood for learning on waking groggily at 7.45am, we have begun teaching Charlie to get out of bed at the sound of the alarm at other times of the day, as in the afternoon. Once he has learned to get out of the bed on his own at the alarm going off, the thought is to transfer this new skill to the early morning when Charlie is actually waking up, and thereby forestall the bumpy Monday morning we started this week with.
A good pro-active plan; Charlie thought it was very funny to see his ABA therapists lying "asleep" on his bed and getting up as the alarm went off; it was even more funny to him to lie on his own bed and then, at the appropriate moment, get up.
This morning, Charlie woke up at 5.30am and came into our room, snuggled under the covers, and went back to sleep. When I set off the alarm inches from his pillow at 7.45am, he did not budge at all, much less bat an eyelash. I reset the alarm with the same results: A sound-asleep Charlie at 8am. Too much talk and too many physical efforts to get Charlie moving have been, I have realized, kindling for tantrums especially when Charlie is coming to consciousness from a deep sleep. I managed to say only one phrase---"Time to get up"----to a half-sleep walking boy who stumbled out to grab the "g'een squishy ball" on the floor, pulls on clothes and socks and a hooded sweatshirt.
We are always trying to promote language and talking in Charlie, but some moments call for silence, and (as I have learned), early morning chit-chat does not appeal to him: It is, it seems, just too much for his awakening brain to process a lot of language, and so Charlie and I stood on the sidewalk, not talking, just waiting.
The day turned out good at school, with Charlie more energetic than usual, and at home, with a full ABA session and a hilly bike ride before dinner. I hovered over and beside him as he ate rice and shrimp for dinner; then it was "hot showah! b'ush teeth! c'oses on, pants on, turn on pic-turrs. All done, yes, bed time"---before 9pm.
The alarm is out for tomorrow morning, and I hope we can be ready for what tomorrow brings, whether snarls or smiles, whether problems or progress. From writing here, I have been learning how to talk about it all, to tell nothing but the truth about Charlie.