Our house was freezing this morning. I had left a couple of windows all the way open, but the smell of whatever Charlie had eaten, and upchucked, on Friday was still detectable. Charlie and his bed were wet when I got him out and into the bathroom to clean him up. My mom had already stripped the guest futon (Charlie's bedroom is also our guestroom) and stacked pillows and blankets neatly and Charlie collapsed there, the outlines of his cheeks and eyes evident. He slid both long-fingered hands under his head and stared weakly at my parents as they kissed him good-bye.
We had planned that we would all drive out to LaGuardia airport to see my parents off, drop by Jim's office at Fordham University in the Bronx, head home for Charlie's verbal behavior session and then drive down to Philadelphia for a Philadelphia Phillies autism awareness night baseball game with Charlie's friend Hal. Instead, Jim and my parents headed to the airport, Jim went to his office to work on his book and then to visit his parents in rehab.
Charlie slept until 1pm and I had the morning off, in effect. I made coffee, and--while the rain poured down--read the third-century Greek writer Longinus' On the Sublime.
The ancient Greek word for "sublime" is hupsos; its basic definition is "height" or "summit" (as that of a mountain) with "grandeur" and "sublime" more figurative meanings. The classicist G.M. Grube translates hupsos as "great writing":
"Great writing does not persuade; it takes the reader out of himself." (1)
"Our soul is naturally uplifted by the truly great; we receive it as a joyous offering." (7)
After examining the writings of the epic poet Homer, the orator Demosthenes, the tragedian Sophocles, and many less-well-known ancient writers, Longinus' conclusion about the hupsos is that "great writing" contains "occasional flaws":
"...would you rather be Homer or Apollonius [of Rhodes, who wrote an epic in the manner of Homer, the Argonautica]......[the choral poet] Pindar and Sophocles illumine all things by the flame of their onset, even though that flame is often unaccountably quenched and they sink to a lamentable level." (33)
The flame that is like a "falling thunderbolt" (34): That is the heights and the depths of being a parent in Autismland, the wages of autism.
Autism parents often refer to "the ups and downs," "the highs and the lows," "the good and the bad," of raising their children with autism. Ups, highs, and the good mean nothing difficult happened (no behaviors, head-banging, discouraging notes from the teacher, hitting, throwing up in the car, etc.). Downs, lows, and the bad are to be soundly avoided and are the "part about autism" that people say they hate and battle against; that lead parents to say "autism sucks."
Maybe it was some time last summer when the principal of the school where Charlie was in ESY told me I had to come and pick him up right now; when I found myself asking everyday not "what did Charlie learn" but "how many times did he hit his head?"; when Charlie kicked out the front window of our house one day and broke the glass on the front door with his forehead a few weeks later: It was at one of those times, or from the accumulation of those times, that I wrenched some part of me (let's call it the soul) and I said to myself, There's no good and no bad when it comes to head-banging and broken glass. It's just what happens. I love Charlie just as much--always as much--when the so-called "worst" is happening as when he leaps upon his bike and rides off for several miles with Jim. It is all Charlie, all autism.
The Latin word altus (as in "altitude") means both "high" and also "deepest"--means both the highest (in the sky) and the lowest (at the bottom of the ocean). That is where my emotions have arisen and have plummeted in raising Charlie and living in Autismland. Sure, I could have done without some of those lows, but I can and will never be who I am without Charlie.
Charlie dragged himself down to the kitchen table around 2.30pm and ate some white rice. "Sit" he told me and we spent the rest of the afternoon on the couch, Charlie looking out the front window for "Daddy come home!" and taking the book I was reading, flipping through the pages, fiddling with the cover. He requested "socks on!" soon as Jim walked in; we later went out as the rain poured down and got Charlie "wemonnaide" at the local Krautzer's and then drove here and there around the neighboring towns Jim passes everyday on his train ride into New York: "There's the place that sells pierogis...I always see that house with bunting....." Charlie had his face turned towards the window but I could tell from the curve of his cheeks that he was smiling.
"I want piggyback Daddy upstairs!" Charlie said, all on his own. "What a long sentence!" smiled Jim. "Up you go, pal." "Giff," said Charlie, handing Jim some colored balls he had been rolling around. "Give, he means take, give means take," said Jim, walking up the stairs.
I put away the balls and, gathering up the folds of Charlie's Daddy blue blanket, ascended the stairs. At the top of which stood a laughing, smiling Charlie.