Here I Am (#164)

Something has been happening to Charlie’s face.

“The peaceful look, open and soft and young, I remember suffusing his face as a baby” which he came home with after his first day at The New School on Monday, has parked itself on Charlie’s face.
Leftylookjpg
Until this past Monday, Charlie had not been in school since the start of November, since he told us vehemently “all done ocean! no beach house!”. We were dead-end puzzled by those words–uttered on the ride down and at home with more than usual force–as the ocean and the beach are two of Charlie’s absolute favorite things.

So we thought about what Charlie associates with the beach and the ocean: fries and shrimp, his friend Mike, summer, summer vacation (= not being in school). Was it too jarring to Charlie’s sense of the ordering of the world to be at the beach while being simultaneously in school and the leaves were turning yellow? Did his anticipation–his dread–of how awful he would feel leaving his beloved ocean override his enjoyment of it?

“School” and “summer” are understood as polar opposites by schoolkids everywhere. Since he first went to school in a preschool autism program in central New Jersey, Charlie has had many days of hopping onto the bus, “working so beautifully” as his preschool teacher put it, and reeling off the names of his teacher, aides, and classmates (“Kathy Jill Helene Miss Thee-ah! Peter Danny Stee-fenn Pete!”). And he has had days in which the communication book came home with news of “Today Charlie was just not his usual self,” and hope for tomorrow.

About a year ago plus or minus, it was not just notes in the communication book that brought this kind of news, of “behavior” and problems. It was phone calls from numbers I came to memorize and mention of ice applied; it was calls and requests and reports that became the daily pattern and the focus of Charlie’s school routine. Figuring out what to do for Charlie’s education became Jim’s and my all-consuming project; became a mission of necessity. One reason I started this blog was to tell the story of a boy with autism who had had the best possible early intervention, gone through all manner of biomedical treatments, had an A+ autism teacher and therapists, and who was not going to have the triumphant “recovery” story of the children in Catherine Maurice’s Let Me Hear Your Voice.

Charlie’s new school is a private school for children with autism; its teaching methodology is firmly rooted in the principles of behavior analysis. While it might not be the right setting for every child with autism, it is certainly the right one for Charlie who, on Day Four, had a harder time focusing and cried some in the afternoon. He needed “more redirection”–the good thing is, he responded to the redirection, rather than casting himself down on the carpet and having a “behavior.” At home, he lay down on the seat of the bus and would not budge. The driver and aide wanted to move him out physically; my mom called me and I played back six and a half years of autism training and concluded: Don’t force him out. Keep your words minimal, or none. I’m driving fast.

Charlie walked out on his own a few minutes later. He wore that soft and open look until it was replaced with closed eyes and an overall relaxing of his body as he fell asleep on the couch. He had worn it in the backseat and throughout a really good verbal behavior session, during dinner and when he requested peas, apples, and his computer and did not get these, as it was almost time for bed.

Charlie’ teacher wrote that he very willingly tries out all the programs presented to him. I know that Charlie likes learning. And I know that Charlie, given his neurological wiring, learns best when taught in the highly structured, intensive program that he began to learn with. The very high standards combined with delight in those silly things that add up to Charlie do not simply motivate him. They say to Charlie, we know you can do it, and we love you for you.

“Super-dee-duper!” rang out from the black car of the back seat when we stopped for gas. “Doo-pure.”

That’s here I am, in Charlie’s voice.

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