by Maria Mutch
The lamp found itself in an unbreakable loop of being repaired or righted and set back on the table for the next attack. That side of the room was too dark without it, and so there seemed to be nothing to do but answer Gabriel’s repetitions with our own. Perhaps, also, the sparse surroundings had gotten to us, and we wanted to insist on this one last thing: light. We wanted him to learn to live with it. For two years, psychology and science were applied to the question posed by his behaviour. Functional analyses were performed and combed over and modifications practised, as if this was the way to break his code, break him, and find meaning in the meaningless. I thought, witnessing his passionate persistence, that there had to be a reason.
I wondered afterward who was persisting more, the child or the adults?
Then one day I was standing in the doorway watching him, the puzzle I couldn’t solve. There was the warm, dim light of early evening, and I stood there watching him watching the lamp. He touched the tight pleats of the shade gently, stroking them as though they belonged to something living. He pulled his hand away, shifting from foot to foot, and reached out to the folds once more, the alternating light and shadow, and it happened again: the hardening of his expression, his hand making contact, the crashing lamp and darkness.
Darkness, except that I understood what I hadn’t before, that he was struggling. He had been trying, all that time, to stop himself from toppling the lamp. But it was a moon yanking a tide. There, in his skirmish with the lamp’s magnetic pull, he was entirely alone. Desire, unabashedly, won. I wanted him to stop being alone.
So I relinquished all the postulations and remediations and attempts to get him to stop, and did something simple: I bought a new lamp. It was virtually identical, except that it was the kind that bolts to the wall. So R got out his drill and carefully measured and, while Gabriel watched with interest, shifting from foot to foot, he installed it. And as simply as that, the lamp and Gabriel have lived peacefully since.
R: How was school?
S: Yes. And no.
R: Did you have fun?
S: Nothing.
This is the theatre of the absurd that unfolds in our kitchen. S, who has discovered the world of codes, grins wildly and scrambles for a piece of paper and crowds over it with his pencil like Glenn Gould at a piano. He gives the paper to R, who can see that N-O-T-H-I-N-G has been written backwards, and so to be properly perceived, the paper has to be held up to a mirror. Which S, cackling maniacally, exhorts him to do. He runs for another paper, works furiously, and delivers the next message, this time with Nothing written in code, complete with an alphabet key underneath. He squirms with pleasure while R and I decipher the Nothing. More loud chortling as he goes off to create another code.
Even though S can make anything ambiguous, yes-and-no has a delicious clarity. We had tried for a long time to find a way for Gabriel to express it reliably. But his neck muscles have low tone, and his headshakes and nods are often hard to discern from each other. Two kinds of electronic communication devices had been tried, neither very successful nor good enough to replace his picture symbols. His teachers decided to innovate, and since separate yes-and-no cards hadn’t worked, they made him a single card with two squares, one containing yes and the other no, and taught him to use it by asking him question upon question about topics he loves and rewarding him immediately for a response. R and I have considered this simple innovation as one of the most profound acts of his schooling. We can’t ask him, Did you dream last night about a dragon? or did the car horn frighten you? or is there a rock in your shoe? and get, necessarily, a response. As with constructing sentences using his picture symbols, the broader language of experience is harder for him to convey, but desire, on the other hand, is direct. We can ask him if he wants something and get an answer. Shortly after we started using the yes/no card, we discovered its potent simplicity, that if we’re sitting in a restaurant, for instance, and found we’ve forgotten to pack his cards, we can generate a communication device simply by writing yes/no on a paper napkin. And so, black and white became another way in, or rather another way out.
He has his yes/no sign in front of him on the kitchen table. Just his presence at the table is a communication—he wants to eat, though he’s had a cold the last few days and has not had much of an appetite. He ignores the food symbols on his plastic board, and having the yes/no card instead means he wants to play the question-and-answer game. So I pull items from the fridge, hold up yogurt, pudding, and cheese. Each one gets an emphatic tap on the no. Do you want bread? I ask. Yes. I pull out the peanut butter and the honey. He says no to both. I point to the toaster, Do you want toast? Yes. I get the butter and hold it up. Another yes. So I make the toast while he waits at the table, watching me. I butter it and cut it into squares, put the plate on the table, and drag out the exchange as long as possible: Do you want this? Yes. And I set it down. He slides the plate slowly and carefully toward him as if it’s something he’s afraid of waking, and then picks up a piece of the toast.
He doesn’t even taste it. He raises his arm as high as he can and tosses the piece across the kitchen. I tell him to pick it up, and he shuffles over to get it and deposits it in the garbage can. Then he picks up his twirly dolphin by the twisty fins and carries it out to the living room. I can see that he is satisfied, that all he really wanted was a conversation and this is the best he can do.
I’ve sometimes wondered if when he stopped speaking and signing, he could have been making, in some way, a choice, even as some of the forces acting upon him were well beyond his control. Maybe communicating through walls had begun to wear on him and the development of a physical vocabulary, including some hitting and kicking, was inevitable, and the sitting on the ground with his legs crossed, arms folded, immovable as granite. It’s nearly impossible to force an agenda on him then, the notion that he needs to go somewhere, get up, get moving, get to bed. Imagine the countless times a day when his plans are undermined by someone else’s, when he’s unable to make an argument that will convince, when the people around him encroach on the him of him.
The Ice
In his hut, Byrd is lying in his sleeping bag, trying to sort out who and where he is. His memory is a tangle of threads with nothing concrete at the ends until suddenly he remembers his routine. Even in the opening and closing of consciousness, the demands of his clocks, which have to be wound, and the sheets of the wind register and thermograph, which need to be changed, are tyrant enough to rouse him. Or so he understands later when he sees that the clocks are still going and the sheets, if two hours late, were changed though he won’t remember doing it.
When he opens his eyes, he sees an enclosing dark and thinks that he has gone blind before realizing that his lantern is simply out of fuel and he is only, in very dim light, facing the wall.
And it’s there against the wall, he writes, with the relief of being able to turn away from it, that he finds the parallel: he had brought similar relief once to his closest friend, Floyd Bennett. (Bennett had been with him when Byrd had made his attempt to be the first to fly to the North Pole; it was a trip that would, over the years, collapse Byrd’s reputation. Alongside the acclaim and the tickertape parade, murmurings had begun to breed: he hadn’t done it, the plane wasn’t fast enough to reach the Pole in the time indicated, the recording of flight data had been twisted to support a fantasy. So said one faction. The rebuttal was never satisfactory.) In 1927, Bennett and Byrd were on a test flight of a Fokker airplane with its creator, Tony Fokker, at the controls when the plane went down. Fokker escaped out the emergency exit and Byrd found himself groping through the wreckage with a broken arm to where Bennett was held upside down, imprisoned but alive. Byrd sat with him while rescue was coming. I’m done for, Bennett said quietly. I can’t see anything.
There was a slick of oil across his face. Byrd reached out and wiped the mess away from Bennett’s eyes. And the look that transformed Bennett’s face was beautiful.
A year after the accident, B
yrd was in the suite that the Biltmore Hotel had donated to him as a preparation headquarters for his first expedition to Antarctica, and in the midst of couriers, volunteers, provisions, and the last-minute begging of funds, he received the crushing news that Bennett, already weakened from the crash, had died of pneumonia.
Now Byrd is in his hut staring at a dark wall, and Bennett has been dead for a half dozen years, but even if he were alive, it would make little difference. Anyone who can comfort Byrd, whether dead or alive, exists in a place far from here, and the only presence on the Barrier are the ghosts who, he’ll later write, will push their thumbs into his eyes in the midst of a blizzard. He is utterly alone.
When Gabriel comes off the bus at the end of his school day, he presses hands sometimes with his aide as he’s stepping down and then breaks into his loping run to cross the lawn and enter the house. He has, I know, so much to say. I can sense how the day has gathered around him, remnants of everything that has happened and everyone who has interacted with him are still clinging. The fire drills and music classes and the smells of the lunchroom. When he first started public elementary school, where he was fully included in the standard program until he was ten, the other students made an immediate connection with him, as if they knew he was more interesting than simply withdrawn and disabled, and could be gradually pulled out. Somehow they knew he was a boy who had a great belly laugh and sense of curiosity, someone who was actually fun, and they went to work on him in an effortless way, offering no apologies for crowding him. When he would push them away, they laughingly nudged him back and he didn’t mind; they touched him until he was touchable. They taught him to revel in the swings and slides on the playground (squeezing in beside him at the top of the slide so he never had to ride down alone), and they modified their ballgames to include him. And what struck me about the games that I witnessed was how blithely the modifications were made, compared to the grown-up approach to inclusion, which involves so much brainstorming and head scratching. Without knowing it, they provided for him an enveloping and consistent sensory therapy, probably the best he has had. The elementary school provided a special room for him, complete with a little trampoline for his bouncing, for the occasions when he needed sensory breaks because he had begun to shriek or hit or for the delivery of therapeutic services, and the children painted on the walls for him, in huge letters, slogans like Gabe Rules.
By the time he was nine, his behaviours became more complicated, and now he spends much of his day in a self-contained room for students with special needs, but nevertheless when I open his backpack at the end of the day, I often find the drawings and notes that his typical peers make for him on a regular basis. His teacher helped him make a card for a boy who dotes on him, and the boy’s response was a scrawled note: Thank you for the card. I almost cryed I really appresheate it thank you again. Another says, Gabe you’re the best! I hope you know that. The girl who wrote it also drew pictures of a piano, sax, trumpet, and drums.
So his day has unfolded with affection and various therapies and yes-and-no questions and his daily peanut butter and jam sandwich. I read his teacher’s note to find out some of the concrete details, always wishing there were more; finding out the rest of his daily story is a trading of nuance. He sits on the stairs in the hallway and I help him take his shoes off. Sometimes he reaches up and strokes my face or cups it in his hands. The day is all there, all of its boredom and excitement and colour. We talk in our code. But occasionally when he gets home from school and sits on the stairs, it’s something else that happens. His face will curl into the start of a cry, a mystifying, unfolding sadness, and he can’t explain to me why.
It was actually the screaming that did it, not the throwing. The throwing—even though it was, and is, confounding—and the other reprises, cycles, and iterations were small compared to the shrieking. I read online another parent use the term hyper-laughing, although much too late. At the time, I thought R and I were witnessing something singular, though I should have known there is no such thing. There must be an attractive quality to the two-year cycle, because we experienced in the shrieking another instance of it, two years that culminated in a denouement, although this one was somewhat different from the lamp. The shrieking, which began when he was a preschooler, made us tight as guy wires. The episodes now are vastly reduced in frequency, but each one is still startlingly the same: the wild grinning and bouncing, followed by laughing that turns into a shriek at so high a decibel we’ve never been able to figure out how he can stand it. Our guess is that the vibration in his skull satisfies him, or distracts him from some other discomfort, or that the impulse simply has to be answered, regardless of how it feels. The more he screams and bounces, the more lost he is.
Here in the night, a shrieking episode gains power, becomes eviscerating. For R and me, the urge in the dark is to avoid coming completely apart, but the chronic lack of sleep has had its toll. Still, when I look back at the worst of the shrieking, I’m not sure how we survived it. S never mentions it, not even when the sounds turn up in the night and the house rumbles with the bouncing.
When Gabriel was about six years old, it was the screaming, and not the throwing, that made us place a call. It was the screaming that finally showed us he was unlike any child with Down syndrome that we knew. We contacted a Dr. P in Providence who specialized in people with Down syndrome. I had my own pet theory at the time, which is that I thought perhaps Gabriel had Tourette’s syndrome, and that this explained his repetitions, his bouncing, his vocalizations; and it just so happened that when doing some research, I’d found a paper on the appearance of Tourette’s syndrome in people with Down syndrome written by this exact Dr. P.
But Dr. P didn’t think that Gabriel had Tourette’s syndrome. After asking us a long list of questions, which he had to do in and around the shrieking, he sat quietly as Gabriel made a perfect display of the tortured waves that engulf him, showing how he disappears behind them. It was awful and wonderful, in a way; he didn’t hold a thing back, it was all there for Dr. P to observe. I can only imagine how our family appeared to him, how ragged and limp, how confused that Gabriel’s words had disappeared and that this was what had shown up in their place. Little did we know that Dr. P had, in fact, seen this before.
He studied R and me over the rims of his glasses. I think your son is autistic, he said.
There, the word plucked and pinned in the air. Autistic. It’s not that I hadn’t considered it; I had refused it. Time performed that hesitating trick, a crevasse opened, and R and I dangled there soundlessly, sledge dogs and all. Dr. P peered at us down the long slope of ice and offered, I’ll send you to someone else to confirm the diagnosis.
R looked pale and grave. I felt a burst of rage form in my chest, even as I knew he was right.
Dr. P was gentle. He had had a son with Down syndrome who died suddenly at the age of thirty-three while the two of them had been attending a conference. Dr. P went on only hours later to give his talk, telling the audience … there is a goodness, kindheartedness, humanity, and magic in our children that must be protected and never be betrayed. He could see that I was struggling with the new word autism, with my anger. Yes, I’m quite sure he is autistic, he said. Gabriel screamed again, and no one reacted. We all pretended that our insides were not ringing with the sound.
When R and I left the doctor’s office holding Gabriel’s hands and he had quieted down now that he had proved who he was, we found an April day with pink and white petals covering the sidewalks and parked cars, and a light breeze. We got into the car and buckled Gabriel into his seat, and before R even started the engine, we looked at each other and started to laugh. Really laugh. I’m not sure we understood why, since this autism thing was veryverygrave andserious, and not, as they say, a laughing matter; it could have had a genesis similar to my grandmother’s funeral when my sister and I started giggling—not because anything about it was remotely funny, but because sometimes the momentous begs the tragic and the mind wi
ll grab for absurdity instead. I think there was something else, also, having to do with language itself—now we had the word for why.
We did take Gabriel to be examined by a psychiatrist, a very experienced one who was at the end of her career and who, like Dr. P, had seen everything there was to see of the syndromes that can collect in the net of a single child. Hers was another of the offices trapped in time. There was an L-shaped sofa that we sank into, cabinets and shelves filled with files and books all around us, and an assortment of toys that S, who had come along, became absorbed in while the doctor held a thick file on her lap and watched Gabriel. He sat between R and me and took in his surroundings as he does, which is to say peripherally. I have wondered what he thinks at these moments, when he is being assessed and observed, when the doctor asks him questions and he tilts his head slightly in response. As he sat on Dr. M’s sofa, he looked as though this scene was in keeping with his expectations, and I took that to mean that we had come to the right place. Perhaps a couple of weeks had passed between the time of Dr. P’s assessment and this one, and I had grown used to the idea of autism in that short period. As Dr. M observed Gabriel and took extensive notes about his development, going back in time to gestation, we were really progressing to a truth I had known all along, that his autism was as old as he was, that it had accompanied us all this way, unacknowledged but nevertheless there. So much there in fact that its cumulative effect seemed greater than that of Down syndrome. In the realm of brainstorms, it was, within Gabriel, a more potent system. Some parents of children on the spectrum have told me how limiting they find the diagnosis, that the act of naming the mystery doesn’t bring enlightenment or relief and instead can mean that their child is rigidly perceived by other people, especially school staff. When Dr. M confirmed Gabriel’s autism, however, my response was the antithesis of what I’d experienced when Dr. P first gave the diagnosis; this time I was accepting. Before we knew what to call it, autism had actually felt more dangerous. Now it was quieter, smaller. Still a gyre with a wide-open eye, but the storm had a name.
