iPod ∞GB (#138)

Hesoff
From the moment he woke up at 7.30am, Charlie’s mind was on one track: “Cindy. Black car!” His one thought was that, today being Saturday, we needed to get into the black car (loaded up with his stuff) and drive just under an hour to the center where he does two verbal behavior sessions every week. On hearing us tell him he had to wait (several hours–his session is at 3.30pm), we could see pangs of anxiety and worry ironing away his cheery smile and darkening his dark brown eyes. He asked for a waffle; he broke half of it into little pieces then sent it and the plate flying with a hand sweep; his worry increased.

I picked up the pieces matter-of-factly. It might be thought that Charlie, having done something he shouldn’t, ought to remedy things by picking up his mess under insistent directives: “Pick it up, Charlie. No more waffles. Clean up!” We have learned that, once upset, Charlie needs to cool down and know that, we always love him and know he does try to do the right thing. I sat with a fretful boy on the couch for a half-hour while Jim talked about inconsequentials. We handed Charlie the guitar and his picking and strumming went from half-hearted to engaged and tuneful. “Cindy,” he said and fixed his eyes on me.

An hour-long bike ride with Jim fast down our street lined with leaf piles briefly alleviated Charlie’s worry, as did a trip to the car wash (the black car was still sprinkled with summer sand). Jim put in a blues CD and we watched the giant sudsy brushes roll by to the tune of “Everyday I Have the Blues.” Charlie was solemn and hummed a bit. “He prefers to hear music to talking,” said Jim, and he and I were silent and, like Charlie, just listened. Charlie got hold of a canister of wipes I had put in the car for a clean-up emergency and insisted on standing it up straight in the space between the driver and passenger seats.

When Charlie’s mind is stuck on a one-way street–“Cindy black car”–is doggedly fixated on some one thing, he is seemingly incapable of getting interested in anything (today I tried homemade spring rolls and Curious George Rides His Bike, with barely a result) until that one thing happens. If I may briefly invoke the problematic computer metaphor of autism, I will say that, when Charlie is in such a one-track state of mind, I try, as gently as I can, to reset his mind onto the equivalent of the Shuffle function on an iPod. The same elements–activities–songs–are still there but the order in which they get played is randomized. One knows what songs can be heard but not in what order they will be played.

Since we had left too early for the verbal behavior session, I drove quite slowly, playing the same singer we have often listened to, ever since Jim and I heard Charlie imitating her version of “Amazing Grace” a few months ago. We were early and (fortunately, from my perspective, though not Charlie’s) the staff was having a meeting and Charlie could not run in to see his therapist as he likes to. He had to wait in the waiting area with another family and a bunch of people and then in a room full of stimuli and toys, where he rolled atop two hop balls and started to press the keys of a Blue’s Clues piano toy over and over. By the time Cindy came out, he was somewhere else, so to speak, and she had to be pretty insistent (with some physical prompting) to get Charlie up and moving, at which point he let out a sad howl-cry. “I know, it’s a weird start,” she said, all sympathy. “He’ll be fine, bye!”

When I picked Charlie up two hours later, he met me with a strong stare: “No home! Gramma Grandpa elevator chair white rice.” For the past few weeks, we have been going to my in-laws’ house and have often brought them take-out from a Chinese restaurant. “We’re not going there tonight,” I said. “No home.” “We have to go to the grocery store.” “No grossree store. Yes. Yes store shopping cart sushi!” Pause. “No home.”
RedgreenI tried out another new CD and Charlie, sleeping-bagged in his blue blanket and the big brown dog on his lap, sat slumped but eyes alert to the new words and guitar riffs and drum beats. He became positively cheery when we stopped at our local grocery store and he got to choose the Deluxe pack of sushi, and this good mood stayed with him through a very long “hot showa” and a riot of running up and down the length of our house until a later than usual bedtime. “Alecksicks! Pah-trees! Pah-trees!” Charlie called out the names of his home therapists with a big smile.

Charlie kept singing the opening chords of Dell’Amore Non Si Sa; he hasn’t quite the soaring tenor of Andrea Bocelli, but–indeed–“with love you never know.” He has also been serenading us with “Havana Moon” (Chuck Berry), “Trains and Boats and Planes” (Fountains of Wayne); “Where’s My Sunshine” (Don Sugarcane Harris); “Galang” (M.I.A.); the “Star-Spangled Banner” and “You’re a Grand Old Flag” (his teacher has a CD with patriotic songs). Charlie likes what he likes–immunity to peer pressure is not a bad thing–and sings what he feels like singing, and the genres and tunes that he has been memorizing–not forgetting?–of late appears to be boundless.

While I do still think the computer metaphor of the autistic brain is limiting–suggesting that (as Wade put it) all autistic persons are the same–and ultimately dehumanizing (as Jason wrote, also in noting the similarity of ABA terminology to that in a computer science textbook)–occasionally thinking of Charlie’s mind as an iPod with storage capacity for songs (and photos and videos and contact info, in the event of an upgrade to the newer product) has a certain poetic justice. An iPod is (to me, at least) first and foremost a music machine that puts a multitude of songs into one’s ears at the whirl of a click wheel. You can adjust the volume; you can pause; you can repeat the same song ad infinitum or fast forward if you don’t want to hear one; you can put certain songs into the “On the Road” playlist for faster access. Most of all, memory in the iPod analogy is based in songs, in music, in the sweet and rhythmic sounds that Charlie seems to listen to best. In the past, Charlie has been obsessed with cassette tapes; he used to take a crazy delight in pulling out the tape and then would moan for hours when he could no longer hear the lost music. With the iPod, there is no tape, and rewinding and finding a preferred song are instantaneous. There is no tracks that only run one way to be heard.

And for a boy with maybe a myriad of songs in his head, it’s a grand thing to be able to find the song he wants when he wants it, so he can sing it for his captive audience, Jim and me. With love you never do know.

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