Another night, another book talk for Jim (at Words bookstore in Maplewood), another event for Charlie to attend.
Charlie and I had dinner in a nearby diner while Jim meditated on what he would read and say. We'd planned for Charlie to stay with me while Jim went ahead to the bookstore. But while I was waiting for the cheque, Charlie pulled on his blue sweat jacket and followed Jim out the door.
I found Jim talking to customers and Charlie standing between the bookshelves and the counter, fingers pressing lightly on his ears and a grin on his face. I stayed and talked to people for a bit myself. The owners of the store have a son like Charlie and the dad made a point of showing me a large section of books on special needs children and their families. When I made my way back to the front of the bookstore, Charlie was seated on a stool and quickly got up soon as I asked if he wanted to go in the black car. We said our good-byes and waved at Jim through the window.
Charlie doesn't yet read and we hadn't been too sure of what he'd do in a bookstore. Last night and on a previous visit to Words, he was definitely glad to go into the store and walked up and down the aisles (and crane his neck when he spotted a rack of CDs). I just enjoyed seeing him in the space, looking around and remembered how back in the spring, the school had told us that Charlie would not (as he had always in previous years) be able to go on field trips with the other students "due to behavioral concerns." Like the OT at the library the night before, people at the bookstore commented on how well Charlie was doing and were very surprised when I noted all the trouble he has had at school. Or maybe I should say, all the trouble the school district has had with him.
I've been doing a very lot of thinking about Charlie's past year in middle school and, in particular, about the methodology used. The public school in-district autism program that Charlie has been in for the past three years uses Applied Behavior Analysis (ABA) as its primary teaching methodology.
In particular, it uses the sort of ABA that many parents of autistic children have felt vital to their child's education and future well-being: Highly structured, data taken regularly and graphed in huge binders (the "raw behavior data" is, though, shredded---I have asked to see it and been informed that this is the policy), emphasis on "appropriate behaviors," focus on decreasing self-stimulatory behavior. The ratio of staff to students is more than one-on-one: There are as many aides as there are students, plus a teacher. Speech therapy and occupational therapy are supposed to be integrated (though Charlie apparently did not do as much speech therapy as specified in his IEP last year as, in the words of the speech therapist, he was often "not available for learning" and the OT left the district in the spring and has yet to be replaced). Charlie has also had Adapted Physical Education daily.
I in particular have clung to ABA because of the magnitude of "behavior problems" that Charlie has had. These have been "textbook autism nightmare without end" stuff and everything got compounded last year because Charlie grew at least six inches and entered puberty at the age of 11. When he was younger, we thought (thought) that some biomedical sort of "treatments" might help, but the effects of these were always short-lived and always faded. Medication has proved helpful for Charlie and a serious change in medication this past June---weaning him off Risperdal, which Charlie had taken since he was 8 years old---seems to have helped him a lot; he's now on some anti-seizure medications, though Charlie's EEGs have yet to reveal any signs of seizures. Time and again over the years we've gone back to ABA after reading up on every other possible educational/relational/behavioral/communicative/etc. etc. etc. therapy. (That is, we have enough books about autism, disabilities, and the like to somewhat rival the selection of books in Words.)
We've been through a number of cycles of "textbook autism nightmare without end" sort of behavior problems. We've done picture schedules and activity schedules, used timers, tried sensory diets, taught Charlie numerous "leisure and play" activities, worked on relaxation and self-calming techniques; taken data up the wazoo, analyzed the data, talked up the data, schemed up new things to do that too often seemed like semi-variations of something already tried. Besides the big medication change (I had always feared to take Charlie off Risperdal due to the possibility of plenty of "textbook autism nightmare without end" moments and this summer, we did see such, and in spades), Jim and I were determined to help Charlie work on other ways of expressing his anger, frustration, fear than the difficult things he was doing.
Stumbling and bumbling, we spent the summer following Charlie's lead and becoming much more attentive to live on Charlie time, to give him time and space to process and work through whatever he needed and needs to in transitioning. We also learned how tuned in Charlie is to the emotions and states of minds of other people and to how he picks up on conflict, anger, fear in other people, and reacts to these. The result at home: Virtually no "behaviors," not of the "textbook autism nightmare without end" sort and certainly not of the sort that led to our school district flat out insisting on the helmet and taking recourse in "four person floor control" (but not telling us until two weeks later).
In other words, Jim and I figured out how to address Charlie's most difficult "behaviors" without behavior therapy or at least the "highly structured ABA." Indeed, at the moment, the helmet and the holds seem to be all that that the well-regarded ABA program in our town's public schools can come up with and, personally, helmets and restraints seem pretty........prehistoric.
ABA helped Charlie to learn when he was younger. Now, on the cusp of transitioning into adolescence and teenagerhood, it seems it's time to leave the tightly-structured, even rigid, style of ABA behind. ABA sort of methods can be useful for teaching Charlie some things now, but a whole school day of it is not simply what he needs.
That whole school day of ABA has become inappropriate. It's become as tight as a certain blue plastic piece of headgear that gets molded onto my son's head with straps that clip on the top every morning by a (male) aide. And the main reason that people shrink from just taking the d*****d thing off and thinking about how best to teach Charlie is fear, is an unwillingness to change and to think outside the box; to think outside the helmet.