Autumn sunshine, with a few clouds (#127)

Today was a perfect autumn day with a blue sky that seemed to shine brighter than ever in the warm sunshine and as a backdrop to orange, red, green and yellow leaved trees. Charlie and I took it all in from the black car’s backseat while Jim drove. It was so warm–though I sensed an occasional pocket of cooler air here and there–that Charlie did not need a jacket when he and Jim went on an early afternoon bike ride.

We had gotten him his "favorite American ‘ood"–a burger and fries from McDonalds–eaten by Charlie in a matter of minutes. Jim had to catch a train to New York but was determined to get in a bike ride on such a gorgeous day. I got the bike helmets from the basement, Charlie’s prism lenses, and his (unnecessary) fleece jacket. Charlie ran out eagerly, mounted his new 24-inch wheeler, and off went my boys. Charlie knows to use the hand brakes when Jim tells him "squeeze brakes" or "stop sign!"–moving objects, and cars in particular, are tough for Charlie to track. (Think of how complex an operation it is to see a moving car, to think about the danger and know you have to stop, and to remember to squeeze the brakes.)

They were gone for the better part of an hour, give or take, after which I heard a familar, wordless voice. I ran out to see Charlie awkwardly standing with a just-stopped bike, swinging his leg over it, and nicking a knee in the process. "Until we got to Center Street, it was his best bike ride ever," said Jim, walking his bike to the backyard. Charlie, mildly caterwauling, plunked himself on the porch with me beside him. Jim came back for Charlie’s bike: "It’s happened now, three times. We get to that street and something sets him off." "Something subtle or a thought in his head or maybe he’s just thirsty?" I said quietly. "Yeah," sighed Jim. He beamed at our still-yowling son. "Cholly boy! You are a great bike rider!" "We’ll figure it out," I said.

Jim went inside to change into a suit and ran off, waving at Charlie and me on the porch, to catch his train; he could hear Charlie’s sad voice all the way ("Hey, it’s let me hear your voice, right?" he laughed when he called me later on his cell phone.) Charlie and I just sat. I waved at another mom in a minivan and idly noted which cars had drivers who looked consternated at hearing crying Charlie and which not. I do think that sometimes Charlie just has to cry it out: He is a boy of feeling, of passion, and a whole lot of heart, and perhaps his strongest emotions are uttered without words, the way music can capture sorrow or pain or joy with a few notes. Charlie was quiet after ten minutes and we went to PetSmart to get a certain useful item (keep in mind, we do not have a pet).

Charlie had a home ABA session in the later afternoon. He worked really well, always coming to the table to work on pre-reading programs and even asking to come back to the table. There was some yowling and furious loud sounds and screeches ("Rocco doggy Portia doggy all done all done all done Arielah all done!") but these would stop for a few minutes (while he working at the table) and then start up, for the first fifteen minutes of the session. Then (I could tell from the therapist’s and Charlie’s voices) it was smooth sailing; they did blocks, activity schedule, more programs. It was as if Charlie wanted to go to the table to get the structure, the expected and predictable reinforcement, but–when he found himself away from that setting–his anxious thoughts overcame him. He had had the same pattern of "happy to be at the table" and "distressed yowling when he wasn’t" yesterday at his therapy session, too.

I was downstairs at my desk listening to all this and suddenly I remembered. I remembered how Charlie had taken so quickly to the Lovaas program when he was just over two years old in the autumn of 1999 in St. Paul. Is it that Charlie learns to crave being at the table, working and matching and doing his programs, because the tight structure–following strict principles of behavior analysis–of our home program’s teaching exactly suits his neurological wiring? Left on his own, Charlie stims: He fiddles with photos of his favorite people, runs up and down the rooms and in and out the front and back doors. He calls for food and the same photos ("ferris wheel Blake!") on the computer. He calls for "Gong Gong Po Po Granma Gra’pa elewator chair" a thousandfold of times. At such moments, his mind is like a scratched record, stuck on the same groove until someone comes by and moves the needle.

The therapist and I talked about how to make Charlie’s "down time" away from the table equally engaging. Our consultant had talked about working on Charlie’s admittedly limited toy play. For the past two years, watching Charlie descend into pinching, crying, head-knocks, loud "AW DUNN" ‘s when we tried to have him play with a new toy, we had stopped buying him toys, period. For his eighth birthday last May, I bit my lip and explained to my relatives that the only thing that Charlie needed was resources to provide for therapy hours. I had been dusting off trucks and shiney game boxes and LeapFrog toys for the past few years and it all seemed a waste. The only thing that I could think of asking for were fleece items–blankets and clothing–soft gentle things to soothe him with.

"How about a Harry Potter Lego?" I said to Jim tonight. "Something age-appropriate." While Charlie did his therapy session, I trolled the Internet for blocks, puzzles, games to challenge his mind and test his skills–just as I used to do when he was three, when he was four, and the world had seemed to gleam with so much hope, with the "goal" of "mainstreaming," of "inclusion," for Charlie.
Hope–as it had been when Charlie, still on training wheels, was just starting to go on longer bike rides with Jim was everywhere today, yowls and all, and the autumn sky so blue with the whiff of something cold to come (it is the "season of mists and mellow fruitfulness"). That was why Charlie and I went shopping for that certain item–a light-blue faux-suede dog pillow–at PetSmart, after seeing how Charlie loved lying on it at his verbal behavior sessions. Miss Cindy had bought such a pillow, stuffed it with more stuffing, and provided Charlie with an excellent sensory and motivating item. He poked a finger into the cage of a $1199 macaw and patted the bags of dog chow. "Who’s it for?" the clerk smiled at me. "My son," I said, pointing to Charlie was tapping a statue of a dog, to make sure it was not real. "He has autism." The clerk smiled more. "My boyfriend’s sister has two kids with that," she said, working the cash register. "They like soft things too." We both smiled.

Charlie pulled the pillow into his lap as we drove home; I stuffed it with filling from some old pillows and dragged it up to his old bedroom now "therapy room." Afterwards, he ate a big dinner of brown rice, five little hot dogs (some meant for tomorrow’s lunch), and string beans and apples. Then–following a long hot shower–Charlie went into our backyard and sat in his playstructure; I brought out a sweatshirt. He came in around 8.45pm, lay down on the couch chattering away, slept, and was carried up to bed by Jim when he returned after 10pm from teaching. "Good night, bumpy boy," said Jim, and I made sure that Charlie’s big feet were covered by the latest gift from my parents, a small fleece blanket with a design of Charlie’s beloved ocean.


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