Reinventing the Wheel Today for Tomorrow (#151)

What is the best thing to do for Charlie?

I can’t remember when this question first rolled into my mind and stuck like the refrain of pop song with a semi-catchy beat and overly familiar words. Eight years ago in the fall of 1997 when Charlie had yet to roll over on his own? One year later, late fall of 1998, when the daycare teachers whispered they had “some concerns about Charlie….neurology…..” Summer of 1999–so hot it was that July–when Jim and I read and wondered and fumbled, What do we do?.
So Charlie’s toddler years passed, and so his first experiences in preschool and in school, and so up to today. “What is the best for Charlie?” “Are we doing all we can for Charlie?” These two questions are threaded throughout all of Jim’s and my conversation the whole day through and into the night.

Like so many autism parents, we have read book upon book, article upon article, website upon website. We have gone to conferences. We have waited long hours in waiting rooms for our 50-minute hour with an “expert.” We have asked questions and talked to other parents and gone to support groups and heard speakers and joined email discussion lists. And, most valuable of all if one is to become a real autism expert, we have lived and taught and taken care of Charlie for eight and a half years going on a lifetime.

Today I drove Charlie and my mom down to the town where I, fifteen years ago a shy and awkward girl from California, attended college. The main point of our trip was a toystore where we found several puzzles and games and more while Charlie pulled a train round a trainset. He was uneasy and kept trying to walk out the door. Wanting to sneak in a bit of Christmas shopping for Jim’s niece and nephews, I resolved to walk Charlie to the university store. One elevator ride and he cheered up considerably, I did the shopping, and he found his way to the case with the sodas and chose a diet Sprite.
The soda bottle tucked under his arm, Charlie moseyed his way up the great stone staircase beneath the tower, past where I had dormed for my first two years, and over the front lawn where my graduation was. (We bypassed my favorite spot, just on the other side of any archway: the library, especially the third floor with the rows of Classics books.) I had mentioned “lunch” but he was in no hurry. We went into a non-descript storefront with glass cases gleaming with cakes and Elmo and Cookie Monster cupcakes (Charlie stared wow) and salads and dolmas and pasta. “I didn’t know this was here,” my mom said as we ordered sandwiches. Back in the black car, I turned on a CD and Charlie munched on chips and swigged his soda.

Back home, he got anxious when he had to wait over an hour for a therapist and knocked two chairs down the stairs and cast himself upon the floor, peeved when I told him to put the chairs back. I pulled open one of the new puzzles and Charlie’s moans subsided as he swiftly put it together. He popped up to greet the therapist, showed off his sight words, and tried out another new toy.

What is the best thing to do for Charlie?

Educational and therapy plans and treatment regimens for kids with autism do need to be individualized according to each of his or her needs. So do we parents labor to show and teach others what our particular, lovely child so needs to learn and grow and thrive. But it also means, however educated we are about the everything of autism, we must always keep reinventing the wheel as we try to build the right road for our son or daughter to walk on. A program that was the best thing one year, one week, may be a shadow of its former self now, and we parents must keep asking the questions of those who educate and of ourselves. Jim and I can dig into the dirt and pour the pavement and pack it down smooth for Charlie, but the road is still his to walk.

And when Charlie stumbles, we are always already there to give him our hands, our hugs, our “you can do it” ‘s, and to reconsider if we are building in the right direction and with the right materials. However heavy his backpack, however puzzled about what he is to do, Charlie always tries and–in our long search for what is best for him–we will always keep trying too, and walking in step with our quiet leader.

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