"We can't have strangers in our house!"
I remember saying this to Jim when we first read about starting an intensive in-home ABA home program 40 hours a week for Charlie. It was the summer of 1999, Charlie was just diagnosed, and seemed to spend the majority of his time stacking a set of 10 plastic cups, staring at a bunch of squares boinging on a toy computer screen, and arching his back/howling when we tried to have him do something else. We had passed an increasingly creased copy of Catherine Maurice's Let Me Hear Your Voice: A Family's Triumph Over Autism back and forth and gloomily concluded that we were going to have to do what Maurice have done: Have Charlie in a round-the-clock therapy program using B.F. Skinner's behavioral principles that seemed contrary to every humanistic bone in our bodies. (My preference is literature, Jim's history; we are not scientists, not even social scientists.)
I have written about some of the overlaps and differences between ABA and VB (verbal behavior) in this post, noted some of Charlie's first ABA learning in this post, and described how much of his successful learning has always been tied to real connections forged between Charlie and an ever-growing roster of teachers and therapists.
ABA teaching is often equated with giving students a steady supply of "reinforcement" in the form of food, toys, bounces on therapy balls and so forth and at one time we had a large closet full of such items. But Charlie has always learned the best when the "reinforcement" is no thing, no bit of cracker, no squishy latex tube with sequins and plastic fish inside; when the therapist herself or himself has been the reason he learns, and wants to learn.
I have never entirely figured out how best to thank all of these teachers and therapists---words gush out of me when I write notes and emails, and any gift seems the smallest symbol of gratitude.
Nonetheless, there were Charlie and I at Trader Joe's this evening, filling a shopping basket with more than a dozen sundry comestible items: There are as many aides in Charlie's class as there are students, plus the teacher, speech therapists, OT, Applied PE teacher, not to mention the art teacher: Charlie just started doing art last week---modeling clay and painting----but the main thing is, Charlie is enjoying art class. This is a bit of a surprise, as the report about art class form his previous public school tended to include the phrase "an incident occurred" (of a "challenging behavioral" nature). (I forgot to send in a shirt for a smock and so spent some of the evening scrubbing his clothes.)
The clerk, who was vaguely college-aged, balked visibly at the sight of all those boxes. "For his teachers," I said, gesturing at Charlie, who was trying to get behind the clerk.
Charlie had just delivered a bag of tea and candy to his Lovaas/ABA therapists; despite my repeated requests, he had placed it on the floor, equidistant from his home coordinator's desk and the couch in her office. He did puzzles while we talked about his sight words (15!), his practicing for the next visit to the dentist, his loud and clear speech, his growing interest in playing games with someone else. Interfused was discussion about how to cope with his anxieties about the upcoming winter vacation and a cross-continental airplane trip on Saturday to California to see my extended family. Charlie does not (at this time) wear headphones and his interest in any DVD seems to be for a maximum of 7 minutes: We talked about getting travel-sized puzzles and making puzzles, coloring (maybe the newfound interest in art will surface on the plane.....), calendars so Charlie will know precisely how long the visit and time off from school will last.........
It was a conversation, not so much an ABA clinic meeting. Later, as I asked Charlie to pick up the bag with the dozen-plus boxes of tea, I thought about my long-ago refusal to have "strangers" in our house---Charlie's therapists and teachers inevitably become part of one big Autismland family, if I may get a little sentimental (it is the holidays). Those "strangers" have become "unstrangers," who once seemed foreign, seemed outsiders, seemed strange---just as autistic persons have been considered strange, unusual, foreign, abnormal, and are now (one hopes, however slowly, slowly) "familiar and understandable, rather than a mystery."
Living with Charlie, trying to find my way in Autismland, has often seemed such an experience of the "strange" (I had no idea what autism was prior to learning that Charlie "had it") becoming unstrange: There is much about Charlie I do not understand, may well never (what does he see when I point to the words in a book? Why does he get that nirvana-look when he sinks himself to the bottom of the deep end?). But Charlie has shown me how much that I had thought familiar is not such at all. I never find a supermarket boring now, but see it as the supercharged riot of colors, smells, textures, tastes, temptations, pleasure-palace, that it is to Charlie, a child who
took bedfellows for moons mountains for friends
That quote is from the poet e.e. cummings and the quote about the "familiar, understandable, mystery" is from Roy Richard Grinker's explanation about the title of his forthcoming book, Unstange Minds: Remapping the World of Autism. Grinker, whose older daughter has autism, uses the word "unstrange" to express how "as the general public learns to understand and appreciate people with autism, the autistic person is no longer strange or foreign"; is "unstrange"----a far different way of looking at autism, and autistic persons, than expressed in Maurice's Let Me Hear Your Voice: A Family's Triumph Over Autism that Jim and I read seven-plus years ago.
Maurice wrote of recovery from autism via ABA, of children acting always "appropriately" and becoming "normal," and losing their autism diagnosis. "Unstrange" rather captures something that is much more of the essence of Charlie, whose differences we seek not so much to iron out as to weave into the pattern that can best enable Charlie and all of his potential to be seen. Similarly, I have seen Charlie's Lovaas ABA therapy shift from being all about recovery and a child being always "appropriate" to being a form of ultra-invidualized and structured teaching that seeks to capitalize on his strengths and bolster his talents, all through the hard work
(if you can
of the many unstrangers who have walked in through our front door.
Charlie often opens it himself now.