Only Connect (#82)
19 September 2005
In need of miscellaneous items--double-sided tape, socks, Capri Suns--we went on a family outing to Target this evening. Charlie ran in the fluorescent-lit aisles and briefly disappeared behind a display of character clothing (Sponge Bob and King of the Hill). We left with all items found and nothing more: Charlie's good behavior in the store has usually been contingent on some desired item, from a Wiggles DVD to a "clear green drink" (a diet Sprite). He followed us out in easy-going cheer.
Jim took the long way 'round home and reminisced yesterday's swim in the warm ocean. "I just feel so connected to you, buddy," he said and held back his hand for a hi-five from Charlie, who duly delivered. Charlie ventured into the backyard for a quick ride on his scooter, a piggy-back from Jim in the long grass, and a climb into the weathered plastic of his old play structure.
"Only connect" E.M. Forster wrote in his novel Howard's End. These words can be a sort of mantra for autism parents, given the communication challenges ASD children have. In Charlie's case, the challenge is many-faceted, given his difficulties simply to speak and to speak clearly due to his apraxia and to the effects of his neurological wiring on his language (as his use of the phrase "we'll be back"). The day, some four years ago, I dropped Charlie off at a special ed preschool classroom in Kirkwood, Missouri, gave me time "for myself," time in which I could not and could no longer know every single detail of what Charlie was doing, listen for every single scrap of sound that issued from his lips. Charlie has been in a classroom ever since (and for a whole school day since June of 2001).
Charlie's teachers and I have also always written in a communication book passed back and forth in his backpack and his home therapists have always written up a page of notes in the logbook. Of course, one would rather a teacher or therapist be teaching Charlie rather than writing elaborate notes, but these short paragraphs can be the only way one knows "what happened" in those hours in which my minimally verbal child was not with me. Some days there is no note--because the teacher is out sick, or the demands of the classroom necessitate her attention elsewhere; we parents then must read the signs of our children--a different pitched yowling, a bit of paint on the t-shirt, a half-eaten lunch--to decode his day.
"Only connect," I say to myself at such moments: Perhaps it is time for Charlie to have a communication book of his own, in which--via PECS cards?--he might explain the day's activities and whether he was "happy" or "sad" about it. He is indeed growing up. While he struggles to communicate in language to us, Charlie has never, I believe, lacked the desire to communicate--to connect--with us. When he runs up and down the length of our house, he is telling me his general joy at the moment. When we went grocery shopping and he dutifully followed my "get a shopping cart"--soon abandoned as he ran to look at and select a pack of sushi and some other choice items (and, equally dutifully, put certain ones back at my behest)--a good-naturedness suffused his face and his being, to be in a familiar place getting the usual things, with a few variations at my urging.
"Live in fragments no longer" is how Forster puts the urge "only to connect." Charlie's language is frequently in fragments only and indeed it is only bits and pieces of his day that come to me. And so I do what I can to put together a pretty complete portrait of things with what I am given. It is detective work, in which I have first to detect the clues and then make sense of everything.
"After being in the ocean, I just like driving in the car with both of yous," Jim said tonight on our unnecessary detour post-Target. "I want juice," said Charlie. "We'll be home in a minute," I put in. "Jooss," said Charlie. "Drink jooss." And then we were home, all three together.
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