The Rough Way to the Stars (#114)

Per aspera ad astra.

Seneca the Younger or Virgil (my favorite Latin poet)–the possible sources of that Latin phrase, “through rough times (‘struggle’) to the stars”–wrote tragic drama and epic poetry about mythological heroes struggling with the gods or hubris or passions or to “found the Roman race,” not weblogs about their eight-year-old disabled son. Early in my writing here I noted how autism is an epic poem, replete with “adventures to places you’ve never been, hair-breadth escapes…, meetings with amazing people.” Epics are full of plot twists, in which now the hero seems in danger of shipwreck and imminent doom, and now he is being feasted in princely triumph and awarded every honor. In Homer’s Odyssey, the hero’s quest to return home proceeds through a multitude of rough times indeed; Odysseus arrives home as a beggar after being away for 20 years to find his house crammed with suitors seeking to marry his wife, Penelope.
Now for Charlie’s Rough Times and Struggle to the Stars.

When Charlie has tough days as he has on Monday and Tuesday, he has often (over these past few years) been stuck in this “behavior squall” as fixedly as we in the Northeast were in those eight days of rain, rain, rain, rain, rain, rain, rain, rain. There is a difference from last year, which is he does pull himself fairly quickly–sometimes even from one minute to the next–out of anger and frustration and returns to smiles–sometimes.

Perhaps Charlie was determined to get his point across when he hit his head on the floor after sweeping some desk work off it and being requested to complete it, and when he hit some more. The school day continued fine, though with two accidents (so that Charlie was wearing an old pair of shorts when I came home) and his home autism consultant observing in the morning and afternoon. Then, for the first time, Charlie refused to get off the bus as it pulled up to his after-school program. He cried. He hit his head. Staff came out to hang on to him. I got the call as I sat in the opening minutes of a faculty seminar on the mission of the University today. I hastened into the hallway and talked too loud to an understandably frantic bus driver. I called Danielle, who was on her way to pick up Charlie. I re-entered the seminar room and got my bag and jacket and smiled the smile of experience? autismland? been there done that doing it again? Was it ironic that I had explained that the Greek word for “test” is anakrisis, krisis meaning “judgement” and being the origin of our word “crisis.”

But I knew, while it was bad, this was a temporary crisis that would be and was diffused once Danielle drove up. Charlie had only to see her when he got right off the bus. “He’s fine,” Danielle told me as I was driving out of Jersey City. I talked to our consultant all the way until I reached our driveway and heard Danielle and Charlie in the back yard. He was wearing his bike helmet and riding his old bike in short spurts.

He and I were soon back on the road for an appointment with the eye doctor (we were late, because I forgot to bring Charlie’s glasses and we had to backtrack). We have been seeing this doctor for four years (Charlie used to wear prism lenses full-time). More recently, it has been necessary to visit her regularly to check Charlie’s vision. Her office is full of stuffed Barneys and Cliffords and Elmos, she has a VCR in her examination room, and she used to have a beautiful therapy dog named Melody who would be sleeping throughout her appointment. Charlie looks forward to going–“doktor Barney, doktor BJ”–and looked at the eye charts, had his pupils dilated, followed the doctor’s directions to put his chin here or look there. He giggled and looked out his window all the long way home. We ate dinner and I found him leaning into his mattress, and coaxed him to shower. He wanted to hear music and came downstairs singing “Amazing Grace,” courtesy of the pop chanteuse Hayley Westenra, whose voice is sweet and feeling-full as Charlie’s.

Jim had been constantly updated about this saga via cell phone; needless to say, if you had only to hear about Charlie’s “incidents” and not be singing “Both Sides Now” with your kid in the car, you would been feeling a bit frazzled. All that evaporates on seeing a smiling, half-pajama’d boy on the stairs: “Cholly! What’s up, bud?” Jim smiled. They watched the Cardinals play the Astros together, Jim enhancing my thoughts about “epic” by using that word to describe last night’s game with that hit by Pujols, and by noting that this may be “the last game ever played in Busch Stadium,” in St. Louis, where Charlie was born.
Thinking over my conversation with our consultant, I said to Charlie when it was 10pm, “you can stay up while I read this book.” “Book,” said Charlie. The book was Time for Bed and I read it without requiring any letter ID or picture labeling as tends to be done with Charlie, in the tired hope that the “reading thing” will “just click for him.” “Good night!” were the book’s parting words. “Bed, little boy,” I said and rubbed his back. There was a pause and then he clambered up the stairs and into our bed and sleep soon fell over him.

Near the end of Homer’s Odyssey, Odysseus regains his kingdom in Ithaca, his status as king, and, most importantly, his beloved Penelope. But he still has to face the aggrieved families of the suitors, all of whom he has killed. Athena, goddess of wisdom, appears just as swords are about to clash and issues her “STOP” to the violence, the bloodshed, the war. It is a triumph–a victory, nike–of her knowledge and cunning (Greek metis) over sheer physical force.

There is a lot of autism knowledge, a lot of ways we can craft schedules and plans so that Charlie achieves a maximum of success and diminished frustration. Charlie used to have to sit in Jim’s lap and be offered a steady stream of verbal praise and other reinforcement, to have his eyes examined. And there he was, in the chair (which he tried to operate), wearing a plastic Pirate-like patch, calling out letters and numbers. There he was, the hero of this blog, as we drove home under the stars, listening to sweet music, talking about toys and therapists we used to have, smoothing a path through the rough together.

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