We toured the large out-of-district autism center yesterday at 10am. It's only about a mile from our apartment---in fact, I've mentioned it before when I was writing the autism blog at Change.org. Charlie and I used to swim at the center's pool, as our YMCA was renting the space (they aren't any more). The pool was lovely, huge and deep and Charlie and I spent many, many happy afternoons there. But the facility didn't have a family or unisex changing room and, even though there were often very few people swimming, Charlie was not allowed in the women's locker room with me and so I wrote this letter in search of a few accommodations. I regularly pointed out to the YMCA staff that the pool was part of an autism school----to which the YMCA staff always answered words to the effect of "we have nothing to do with that."
I had driven Charlie by the big center last Thursday and Jim and I had been talking about it on and off to him, sometimes noting that it's where we used to swim. (Apparently the students don't swim too frequently, perhaps once a month, and the roof of the pool area is currently getting some repairs so no one can swim.) Charlie ran right into the center and looked around: It is a huge space (imagine an indoor mall sort of building and layout), with three levels and almost 200 children. A staff member (behavior specialist) introduced himself and took Charlie around the building, while we went on a tour with the director and Charlie's case manager. ABA is the main approach but it's not as "tight" --no timers going off every few minutes -- as in the public school autism program that Charlie is currently in. The staff to student ratio is also not the same as in Charlie's current school (and on his IEP, which states that he is to be in a 1:1 staff-to-student ratio instructional setting.)
The classrooms for the children in the secondary (high school age) level are located in the lower section of the building, with each classroom set up as a "store"---ShopRite, a barber shop, a bank, a hardware store. (All of whose real-world and actual equivalents--and also college campuses---Charlie visits, as we noted to the center's director.) There's a cafeteria where the students eat (Charlie currently eats lunch in his classroom, as the middle school cafeteria is quite chaotic) and also, besides the pool, a gym, an indoor track, exercise machines (which Jim is familiar with, as he used to use them sometimes while Charlie and I swam in the pool.) We recognized quite a few students, from previous schools, weekend and afterschool programs.
A brief conversation with the director revealed that, if all that one read were Charlie's school file, one would think that he is a "head-banger." I had printed out some blog entries about how Jim and I address Charlie's transitioning, his communication (verbal and non-verbal) and his sensitivity (to sound and much else, including the emotions of people around him.)
Jim and I made it very clear, Charlie wears the helmet in one location---the public middle school in our town. There was talk about "fading it out" and you can be sure there's going to be a lot more talk about this. Sometimes I think we'd better just invite all the school staffs to run errands with Charlie and me, kayak with Jim, and eat out with us at various diners around New Jersey so that it's very clear how Charlie does NOT, NOT, NOT need the helmet.
The director asked me what Jim and I do when Charlie has what I guess might be an "autism nightmare without end" sort of "behavior" and we said, he has those at school, not at home; that we can tell when Charlie is telling us something does not feel "right" in him and how we respond, validating his feelings and keeping ourselves cool, calm, and peaecful easy-feeling.
Apparently we'll learn whether or not Charlie will be accepted at the center by the end of this week or early next week.
Tuesday Charlie had gotten up early, perhaps in anticipation of the big day. After we got home, he headed for the refrigerator (no surprise there) and then had a bike ride with Jim in beautiful fall weather. Once home, Jim gathered up his laptop and books to take the train to NYC. Charlie stood and said "Dad," and then held Jim's arm with a big smile. I thought back to how hesitant Charlie had looked when the staff member had indicated Charlie should walk with him while Jim and I stayed with the director and Charlie's case manager. I wondered, did Charlie think that we were going to leave him there?
As a result of hearing talk of a residential placement, "temporary" or not, around him (not with Jim and me, we have a policy that we don't talk about Charlie in front of him, and certainly not about such a topic) I have thought that Charlie has become spooked to the point of thinking that any new "placement" for him could be a residential one.
And the reality could not be further from such a thing.
That's why I gave this blog the name it has.