This Kid Has Heart (#154)

Crackingup
Throughout all of Charlie’s young life, one theme is dominant: Nothing has come easy for him, or without loads of hard work. (And sweat, and tears.) Charlie was 3 1/2 when he pedaled his tricycle on his own; 4 1/2 when Jim taught him to ride a little bike with training wheels; two months shy of 6 when the training wheels came off; and approaching 7 when he learned to “squeeze brakes.” And, while Jim and I no longer do actual ABA teaching sessions with Charlie as we did when he was 2 1/2, we integrate the behavioral science principles of ABA in our daily routine, to teach Charlie activities from swimming to teeth-brushing to saying a new word.

I can still remember how tiny Charlie was when, at our first ABA workshop in September of 1999, he learned to sit in the little purple Little Tykes chair at his plastic table. I also remember how he wailed at having to do something–coming to the table at the words “come here” (and to stop fiddling with, stimming on, a set of plastic cups)–and how his smile broke out like sunshine through the storm when Kristy, Arielah, Tara, Stella, Beth, clapped and cheered.

Charlie fixed his gaze on me tonight as he stood on the stairs and called out those five names, and smiled. He had just pulled on his blue baseball “jahmahz” after a one-hour swim. He stood on a swim noodle, did laps on his stomach and back, teased me by climbing out of the pool and jumping in someone else’s lane (a kindly lap swimmer held onto him until I could get out). “He’s in a good mood,” she laughed. “Oh yeah,” I said, “and it’s making him goofy.” Charlie did a few somersaults under the water, held his breath and sank to the bottom before flexing his body and floating up. At home, he asked to stay on the couch and, his face assuming the sweet innocence of his baby days, fell asleep cocooned in “Daddy bue bankett.”

That big brown-eyed stare, a little glazed, and meek, and puzzled, was Charlie’s expression this morning as he sat at a table and, through sobs, matched words and words to pictures and identified objects. “I want green apple! Match!” his little voice rang out, weakly. He was in a new place, there were all sorts of new people, and a few familiar faces saying familiar things to him: “What is it, buddy? Match! You did it!” Charlie wept; Charlie matched; Charlie talked; Charlie sat for almost a half-hour with his home therapist and then with a teacher. “You can see how hard he’s trying,” Jim whispered behind me. “He knows what’s expected of him–all those years of learning in him coming to the fore.”

It’s all those years.
Standinginwater
The sweat and tears have not only been Charlie’s.

When I think of the long afternoons on a freezing snow-bound day—-

When I think of the monotony of the doctor’s waiting room at 4.53pm, three kids ahead of us, and I’ve forgotten a snack for Charlie—-

When I think of the champagne flutes one of Jim’s friends gave us for our wedding and how I never opened the box till a year ago, and how the styrofoam packing had dried up into misshapen pellets–

It’s all those time Charlie knew in advance that he’d have a happy time sitting at the little blue table (or the pool, or on his bike, or in gymnastics class), and now at his desk, and learning, and all those times he worked hard, and all those time he left smiling and then called the therapist by her name, exclamation point. The plastic number cups are long gone.

It is particular moments like these that speak to how hard we have tried to do the best we can for Charlie and, even more, how hard he has tried; how this is a kid with heart. This is a kid who learned early on in his life about how fun it is to learn, and how much love has to do with it. And I do tend to bury myself in such moments and details of daily living; in trying to figure out how best to help Charlie. If I’m to do so, I tend not to think more than I might about the causes of autism, about mercury and the often contentious exchanges about these. From the moment he was born, Charlie was Charlie, as he is and will be. It goes without saying that ABA and education have played a fundamental role in Charlie’s life. It is also the case that we have implemented many biomedical interventions for Charlie, including a special diet and anti-fungal therapy.

And it is above all true that Charlie is a kid for whom Jim and I do whatever we can, whatever it takes. Like I said: This kid has heart, and it’s our boy Charlie who gives us the courage to keep on going for him and for all of us together.

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