You Got Charlie?: On loss and laughter (#123)

"Hey, where’s Charlie?"

Jim and I were standing in line to board an airplane to go to Cleveland for a conference on autism and the humanities; my parents are staying with Charlie. The habit of making sure we have our boy has become an innate function for me like, say, breathing. I like to write that we are walking through our life with Charlie’s hands in ours but holding onto him is both a nice metaphor to express our love for him, and a practical necessity.

Charlie’s own lack of unawareness of what him being lost would mean makes Always Making Sure We Have Him a fundamental rule for us, and for all of us autism parents about our kids. "My son could not tell anyone who he was, who his parents were, or even that he was lost," one parent wrote in response to a report of a missing autistic child (who was found by the police). Another mom told me of her "nightmare" when he ten-year old son eloped (the technical term for this behavior) through the windows, once clad only in his underwear. (He was en route to the video store.) Her house now has alarms on all the doors and windows. Charlie does not always respond when he hears his name, too, especially if it is called by an unfamiliar voice.

So Jim and I have been continually looking over our shoulders for "the boy" all day and will until we return home on Sunday. We had explained to Charlie about our going; his response was that his brown eyes seemed to get a bit bigger. "Mommy Daddy," he said.

This morning Charlie was up earlier than usual and, instead of staying warm under his blankets as long as possible, was up and about. He ran into the front yard as I was grabbing breakfast and putting a few last items into my suitcase. "Put on your blue coat," I called out. "And your black shoes, sweetie! It’s cold!" "No coat," he said. "No sues." But he came back in and donned both, as well as his fleece hat, then hopped into the black car as I went in and out loading it up. Consequently, we got to his school early and I watched him walk off with his teacher, a spirited smile on his face.

I had that smile in mind when the school nurse called to tell me that Charlie had had an "incident" with head bangs and through speaking later with his teacher about it, and hearing that he was responding to directions from the gym teacher with another "incident." And Smiling Charlie or at least Peaceful Easy-Feeling Charlie is how he is for most of his day, at least. And it is true, we do have to be pro-active for the tough moments but that does not mean that we should ever let these define who Charlie is and what he can be. Give Charlie attention for all the positive things he does–the words combinations he has been putting together ("Daddy white shirt stairs!" "Mommy bwown shirt fwie down!"), sitting nicely in his chair, using his fork properly–goes a long way towards Charlie being his peaceful easy-feeling self more and most of the time.

My parents reported a smiling boy when they picked him up; we heard a few consternated rumbling from Charlie when Jim and I were giving them direction to my in-laws’ house. I had my own moment of consternation when I realized I had left my cell phone charger in my office only to reason that when I mostly need it during the weekdays. Jim exchanged a few "hey Cholly" ‘s with him once they had all gotten to my in-laws’ house for dinner. And Jim and I proceeded to walk several blocks to the law school of Case Western University, to hear a talk about Hollywood’s "fascination" with autism–Rainman, Mercury Rising, Bless the Child, House of Cards. Autism in these films is represented as an enigma, as "other," as a gift; while an autistic character (a child in most of the films) is crucial for the storyline, he or she is not really a presence in terms of screentime. The child actors all seem to "underperform," sitting or standing around with big-eyed slack faces, limp posture and minimal, if any speech. Someone else (Bruce Willis in Mercury Rising) is the hero.

Jim raised his hand at the end and asked, what would an autism comedy look like? Hollywood films with autistic characters depict autism as not only a tragedy, but a family tragedy–to me, a gross misrepresentation of what life with Charlie, incidents and all, is. The mom whose son escaped all those times in his underwear told me about that "nightmare summer" with a lot of laughing. Life with autism can make us parents desperate and depairing, but Hollywood has so far got it wrong: I think of our rich and good and joyful life with Charlie as the true Human Comedy, starring the best action hero of them all, Charlie as himself.

It’s a big role for a little guy, and we know he can do it and shine like the superstar he already is. At the last minute this morning, he grabbed his lunchbox from the fridge and dumped it in its "hiding place" under the sink. "WUNSBOX!" he said to me, laughed, and ran off. (In Charlie’s version of hide and go seek, he, like MOM-NOS’s Bud, tells me where he hides things.) I "found" the lunchbox and put it into his backpack. So Charlie keeps us our laughing till the proverbial tears come down our faces.

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