We Take the Skyway

Occasionally something happens, usually something small and fleeting, and I just know, that flicker of a moment sums up so much about our life with Charlie, with autism (and “with autism” is the right term here, I think, rather than “autistic”). It sums up what it feels like, and how far Charlie has come, and how our family’s life is no fight against autism the “common enemy,” as the Bergen Record, puts it. So many things are not easy for Charlie: He is disabled and the list of limitations to his life often seems to grow longer everyday, as the differences between Charlie and the children his age only seems to grow.

Charlie does not have any friends who are his age. He is (as far as I can tell) fond enough of the other boys in his class, is ever more curious about other children as of this past summer, and certainly can count many adults as his friends. But if other boys of his age are hanging out together at little league games or playing in backyards or at videogames, Charlie hangs out mostly with Jim and me, and this Saturday was no different.

Consequently, Charlie often ends up doing things that most children (if not most adults) might find less than appealing: Today’s task was to go to my office and xerox innumerable pages of documents. Charlie is not fond of my office, which is in an older brick building; the window has a view of a dorm wall (also brick) and the furniture, which was new some time ago, is not comfortable (good if you need to sit and get work done, bad if you are a 10-year-old boy and just want to stretch out). After some twenty minutes of whining (which I would have assumed any child would have done), Charlie settled in, looked at the photos he had brought with him, and very happily consumed a brownie I had brought. When the paper jammed in the machine after every other copy for 15 minutes, Charlie sat in a swivel chair and just waited.

But about that “this is what it’s like” moment. It had already happened, while we were driving over the Pulaski Skyway, a 3 1/2 mile long steel cantilever and truss bridge that takes us over the New Jersey Meadowlands and via the Broadway exit ramp (that’s what is depicted in the photo) onto Routes 1 & 9 in Jersey City. Charlie had woken up at 6am, did an ABA session from 10am (that ended with him racing the therapist on his scooter) until 12noon, and fell asleep wrapped in his blanket. He had not, therefore, had any lunch when I roused him to get into the green car and go to my office with one purpose in mind: Xeroxing the big project.

Charlie always sits up straight when we drive on the Skyway and the view is something to behold. New York City is straight ahead and, at one point, you feel as if you are driving down on top of the Empire State Building. We were up there over the Passic River and the smokestacks and the lots where new cars are kept and the junk heaps where old cars are, well, junked, going something-fast-miles-per-hour when I heard a voice from the back seat:

“I want rice.”

I had cooked a bowl of rice for Charlie and set it on the backseat; just as we set off from home, he said “Give” and handed me the bowl, which ended up on the floor (and perilously close to my files to xerox). (Well, I surmised, at least rice will just stick not stain….)

“You want the rice now?” I asked. Manhattan skyline straight ahead on a crisp fall day. Why is it that the questions always come at a moment when my attention is quite otherwise occupied? Or hold on, that’s just what everything with Charlie and raising a child is always like: There are constant interruptions and fires to put out and things to clean up at the very moment when you need to be concentrating on something of crucial importance for your job. Just when you think you can get down to business, that voice comes from the backseat……

“Yes, rice. I want rice!”

“Well, you’re going to have to wait. We’re driving on the Skyway and now is not a good time to get it for you.”

In previous years, if Charlie talked, we responded faster than immediately, if that is possible. At first, because we were so thrilled to hear him talking; then, because he went to figurative pieces if we did not and who does not want to keep the peace. But Charlie is 10, or rather 10 1/2, years old. Charlie understands that he can’t always swim in the pool he wants, or eat certain foods, or get what he wants right now. There is much about Charlie that says, this is not your typical 10-year-old boy, but Charlie is no toddler’s mind trapped in a too big body.

“Have to wait,” said Charlie. He sat back and looked around: To our right was the Route 1 and 9 truck bridge and, slowly, a growing line of cars: The Skyway needs repairs; since some 85,000 vehicles cross it a day, the construction is being done only in the left lane from 10pm Friday till some time on Sunday. We inched our way to the exit ramp and, when we stopped for a green light to turn onto 1 & 9, I handed Charlie the rice and we drove to my office.

After the xeroxing was finally, finally, completed, Charlie and I walked down Kennedy Boulevard and took the PATH train to the World Trade Center stop, where we met Jim and, at the top of the stairs, a group of protesters were contending that “9-11 was an inside job” and that “we are change.” Or rather, “WE ARE CHANGE”: I could not see too many protesters but they were megaphone-level loud and Jim and I were not surprised when Charlie started to repeat their slogan as we took the subway up to Columbus Circle.

“We are change! We-are-change,” said Charlie.

Thanks to Charlie, I have learned how much I can change, and why the view from the Skyway, and the voice in the backseat, show me the way.

We are change.

Pulaski Skyway entrance ramp (Broadway) photo courtesy of Rob_Sterling via Flickr