Sidestepping Catastrophe (& Some Barking Dogs, too) (#126)

Every day as I hug Charlie good-bye at the door of his school, I wish–I suppose I pray–that he will be peaceful and stay calm and together and have a good day. And then I get in my car, with the uneaten “appo waffo” growing cold and crusty on the back seat, and head for the Garden State Parkway. And, it’s true, then my mind starts roiling with thoughts and plans and worries deep as the ocean and I’m not feeling peaceful at all.
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Being the parent of a child with autism means that you feel that, every single day, you have to make decisions that will alter the course of his life and of yours. You see him lining up a Barney and a Wiggles CD case in front of his CD player, with the cord in an almost-perfect circle around them. If you don’t move one of these objects, won’t he always do this? Or: If I let my child get a taste of some food item with traces of gluten will he be hyper or have a stomach-ache and not be able to sleep, and won’t that impinge on his school day negatively, and then he won’t make progress on his programs and he won’t advance and—–. Or: If I don’t get my child to sit down RIGHT NOW and nicely in this gymnastics class he won’t be welcome in it and then he’ll lose a valuable chance for socialization with typical peers and then he won’t be able to be mainstreamed—–.

Of course, what I’m falling into here is the kind of catastrophic thinking that autistic children can be made prisoners by. If I don’t get to eat the sushi after the bike ride, the world is over and there will be screaming and gnashing of teeth. If I can’t put the blue block beside the red card in perfect symmetry, the world is over. If I can’t go outside and run in the front yard and into the neighbor’s driveway, the world is over. [Smash.]

Over the past year, we have tried (what can we do but try?) to help Charlie through and out of these “the sky is falling the world is over” moments by trying to explain some notion of time to him (“we will get sushi, just not right now”) and by simply showing him that, if the blue block is not beside the red card, everything is still all right. (We do, though, have to be ready for how Charlie reacts when he thinks the world is ending and, with some proper training, we have been on firmer footing here.) This is one big difference in Charlie’s education from that of typical children, namely that, on top of him having the learn the basics of reading, writing, ‘rithmetic, he also has to learn to focus and to make the most of his unusual neurological wiring.

Today Charlie had good reason to engage in catastrophic thinking. He more than enjoys visits with my parents and always worries over their coming from California (“No Gong Gong Po Po! No!”) and then their leaving (“I want Gong Gong Po Po all done Gong Gong Po Po!”). My parents retired last year and, Charlie being their only grandchild, they are able to visit us quite frequently. I do think that, ultimately, it will be of great value for Charlie to handle these kinds of changes. When he was younger, changes like the comings and going of people–family, therapists–seemed to pass over him; if he did become upset, we did not connect it to the actual reason. But now that Charlie is older–8 1/2 years old–and has some language, he can express his thoughts to us (in limited fashion) and he certainly tries.

So, the entire day until 6pm was punctuated with “GONG GONG PO PO GONG GONG PO PO ALL DONE GONG GONG PO PO!” And various cries, kicks, yelps, etc.. I got Charlie up early and he stayed awake, but worrying in his bed and then on the living room couch and then, more quietly, in the black car. He smiled on walking to the school entryway. The day had an “off” feel to it, due to Halloween; I found myself looking twice at a college student dressed as a sort of Gothic cheerleader, or another whose melting face was really a rubber mask topped by Kool-Aid dyed magenta hair. Charlie had his gluten-free cupcake with a nice mound of frosting and marched, alone with his teacher, in the Halloween parade. I got a call from the afterschool program that he had an accident and he did not have spare clothing. Danielle picked him up and showered him, during which time our ABA therapist came and–as most children in our town trick or treat in the afternoon daylight–passed out candy. Then she went to work with Charlie.

As I drove into our driveway, Danielle was passing out candy with a smile; I took over and we almost ran out. Meanwhile, screams of “all done Rocco doggy all done Arielah photos all done” stomp stomp stompstompstomp were emanating from upstairs. When the therapist came down, she reported that Charlie had done 100% on all of his programs; all the yelling had occurred when he was not at the table working. And, he had been eager to sit down and work.

After a hamburger, noodles, and “peess,” Charlie started smiling and stayed that way. Jim came home and, with Charlie suited up in Jim’s old Pittsburgh Pirates jacket–given him by his grandparents and bearing Roberto Clemente’s number–the three of us were trick or treating on the peaceful, dark streets. “Every year we have to do something new,” said Jim, and he proceeded to instruct Charlie to ascend the stairs by himself (whereupon Charlie tried to open the door of a house, at which Jim hastened up and showed him the doorbell). Jim prompted him through saying “trickor teat” and “t’ank oo.” We made the rounds, Charlie rattling the ever-growing store of loot in his plastic ghost-head bucket.
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At the third or so house, a black dog with a big bark startled Charlie, who ran down the stairs and into the yard with alacrity, then back up, creeping beside Jim. “No dog. No. Doggy yes. Doggy!” After that, Charlie peered warily through the screen doors, as if every house had its dog and he needed to steel himself for the barks and the potential running-out of some noisy beast. (“Up here, Cholly!” Jim called more than a few times, when Charlie ran for the lawn before the door opened.) For his lovely efforts, Charlie was piggy-backed home, while I carried the bucket.

“Eensy weensy spider!” Charlie said as we stepped into our living room. “First put on PJs, then spider,” I said. He ran up the stairs, got dressed, thumped back down: “Eensy weensy spider. Mommy! Appo waffo. Geen apple.” “Which do you want?” “Geen apple. Spider!” Thumpthumpthummp, back up the stairs. Jim was checking out the candy and answering the door for the remaining (older) trick or treaters. I heard Charlie singing the tune of “Love Is a Song” from Bambi.

Around 9pm, the music still playing, Charlie stomped down with a red fleece blanket and a new one my mom had just bought for him, with a fish design. He was smiley and lay down on the blue and white striped couch, and it was there I soon found him, self-swaddled in blankets, sound asleep, catastrophe averted for one more day, and something like peace in the air. And it was simple what we had to do–to carry him up to bed–to take care of the best boy in the whole world and kiss his big forehead goodnight, and get ready for tomorrow’s adventure that comes each day like a song.

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