Know the Night (18 page)

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 will 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.

Gabriel was already receiving the therapies and communication aids that are normally applied to autism and that have never been denied us (a perk of significant and obvious need is that you rarely need to argue over it), but she had one thing to add: a medication to treat his physical and vocal tics, in the hope of reducing the frequency of his screaming. R and I, who had always used noninvasive therapies for him, were conflicted. What we put into his body was something I had obsessed over; he hadn’t tasted processed baby food, for instance, until he was fourteen months old when we resorted to it on a camping trip. In the case of his shrieking, and leaving decibels aside, how do you decide what is legitimate communication and what is an affliction? His right to make the sound had to be weighed with his right to be freed from it. Here
is the thing of this odyssey: we are so often having to confront our preconceptions. Treating his seizures with medication had been an easy decision, or no decision at all actually—it was a given. But the specificity of treating his screaming—the screaming that seemed both of him and not of him—moved into that quagmire of children, drugs, and psychological disorders.

Except for this: we were witness to both the sound and Gabriel. It seemed like magical thinking to be offered a pill to ameliorate a sound—one that held the place where speech had stood—but there it was, and almost unbelievably, a low dose of it, called guanfacine, worked to some extent. Or rather, used in conjunction with nutritional and behavioural therapies, it works some of the time, lessening the severity. When his bouts of shrieking and bouncing sometimes still turn up in the night, which occurs much less often than it once did, we’re reminded of their acuteness, how they fragment the night, but in our experience of autism, one thing is always relative to another. Sometimes the feat of simply managing can indicate, in some way, a comparative success. What I can say about the sound is that there is less of it and more of Gabriel.

T
he Ice books that come to the house usually mention Ernest Shackleton. In 1914, on his third trip to the Antarctic, his expedition
turned dark when one of his two ships,
the sturdy
Endurance
, became trapped in the pack ice of the Weddell Sea and was slowly pressed to death.
^*
The photographs show her turning brittle, turning into a ghost, her rigging a web of crystallized threads. She looks massive and fragile at the same time. After many months of being held by the ice and battered by the undulating pressure of its grip, she was approached by a group of emperor penguins who, lured by the sounds of the fracture, stopped to watch. About ten of them were gathered there and they made a strange, collective cry, prompting one of the men to say,
Do you hear that? We’ll none of us get back to our homes again
.

Home
. The specter of the place we’re always shooting for, the nebulous point Shackleton and his men put at such a terrible distance that penguins came to cry.
Home
consists of what we think we’re entitled to, what we were born to, and all we want is to get back to it. The irony is lost in the night but not the desire or the fear that we’ll never find the way; those stick our eyelids open so we can continue scanning the dark for the shapes we don’t recognise.

When Shackleton and his men, who had continued to live on the ship, finally sensed its inevitable demise, they raided her for essential items and set up camp on the ice. Shackleton ordered the men to give up anything unnecessary to survival and made a show of ripping some pages from his own Bible, the one given to him by Queen Alexandra, for keeping; he placed the Bible on the pile
of redundant items that the snow was claiming. Fresh words were another thing, however, and the men with diaries were allowed to keep them.

There is this, too: they had a radio receiver with them, meant to pick up Morse code broadcast from the distant Falkland Islands at the start of each month. They tuned in and waited, none of them expecting much, as the receiver strained for radio waves in the cold air and all they heard was static.

Three more weeks of suspension, the ice pressing hard on the ship, when suddenly Shackleton glimpsed movement, and the
Endurance
tipped, raising her stern. She gave in, and the ice, resolute as any predator, gulped her down. When Shackleton went to record the event in his diary, there was only the open sprawl of the page. He was able to leave just one sentence:

After that, much hauling and clawing to keep alive. Shackleton and his companions sailed the wild sea in three small boats saved from the
Endurance
and landed at Elephant Island. He chose five men to accompany him further in one of the boats, the
James Caird
, just twenty feet long, to attempt at reaching South Georgia Island and its whaling station, a crossing of 800 miles. The remaining men waited on Elephant Island, using the other two boats, overturned, as sleeping quarters. The
James Caird
reached South Georgia after approximately sixteen days, and Shackleton continued over land with two of the men to find civilization at Stromness, which lay on the other side of seemingly impossible terrain. After finding the station manager and declaring who he was, Shackleton set in motion the necessary rescues. First, to collect the three men waiting
on the other side of South Georgia, and then after five months and two aborted rescue attempts, he obtained an old steel-hulled boat from the Chilean government and found his men on Elephant Island. All this, and not a single casualty. Each of the men who originally had been on the
Endurance
got to go home.

O
n the other side of the Newport bridge, a band is playing jazz. Crossing the bridge is like crossing over. Gabriel dozes in the backseat of the car as he and I drive through the dark, from streets rimmed in farmland, south to the squat bridge that leads to Jamestown, to the Pell bridge with its cathedral arches and strings of lights and the quiet black sea underneath. It’s quiet, too, in the car. I shut off the music as we coast along the bridge, under arches, toward the little club that waits. Gabriel’s eyes flutter open—he knows we’re getting close. Back at the house, I tied his shoes as he sat on the stairs and told him where we were going, that he would be hearing jazz, and he smiled, then galloped to the car, twirling one arm like a pinwheel, which he does when he tries to speed up. On the other side of the Newport bridge, his language is being spoken.

The guitarist says they are going to do “Summertime,” and a guy who has been waiting to join in springs up from a bench near the street window. The musicians waiting to be called usually have
a trumpet or sax, or something more exotic like a djembe, but this guy just has his voice and a mic. They start in on an upbeat, peppery version, very different from the languorous original but it’s there, “Summertime,” and I look at Gabriel, how he hugs the notes and presses into the grooves. This particular song belongs to his birth. After he was born and being cared for in the special care nursery, where he was hooked to machines and glassed in, I was alone in a room down the hall from him. I had the curtains drawn and the lights off when a cleaning woman stepped into the room and stirred the light of the open door with her broom. While she worked, she sang
Summertime and the living is easy
, the entire song as she swept the room and emptied the garbage can.
Your daddy’s rich and your ma is good lookin’
. At the time, the duet with Armstrong and Fitzgerald was one of my favourite tunes, and it seemed like a gift that she sang it.
Hush little baby, don’t you cry
. She left and I was supposed to be resting but, even after a couple of hours, sleep was impossible. R and I hadn’t been able to get hold of most of our friends and relatives earlier in the day—this was in the days before smartphones, and we had called people on the phone beside my hospital bed to say that Gabriel was here. The following day would bring a chorus of responses, but that day, the day he was born, the voices were uncannily absent and it was as if the world had turned away. The nurses told me to grieve, ostensibly for the child that didn’t turn up but, like sleeping, this also seemed impossible. There was no grieving for me to do, and as anxious as I was because he was in the intensive care unit, the moment of my hesitation had long passed and something else was settling in. I realised I was deeply in love, in a matter of hours, with my new son. It was past midnight, and I got up from the bed, moving my sore body carefully, and emerged into the light
of the nurses’ station where one of them sighed,
We can’t seem to keep you down
. I walked past them and went to sit in a chair beside Gabriel in his incubator and watch him, so small and powerful.

So this version of “Summertime,” the one he and I are listening to in the club, the one with the guy planting his feet deep in the ground while singing, is different than the usual meandering kind. It has a fast tempo and a raucous band turning the whole thing on its head. It gets more and more celebratory, and louder. There is no room for grief here and no cause. The drums are pounding. I lean toward Gabriel and tell him,
This one is yours
. I don’t know if he can hear me, but it hardly matters; he is inside it.

It’s time to take him home, head back through the night and over the bridge. The band has stopped playing, they’re taking a break, and suddenly what has been stable becomes brittle for Gabriel. The musicians are ordering drinks and talking, heading for the back, or checking their instruments; they’re standing on the curb with their cell phones. In the pause that forms, the desultory rushes in. And maybe that’s it: Gabriel becomes aware of the irritating blandness and unpredictability of the everyday, the things that are happening when jazz isn’t. I imagine he contends with his bodily sensations—the way his shoes feel, or the skin on his hands—at the same time that he seems to become aware of what is around him—a row of glasses on the bar, someone saying
jimmyheyman
and
shitnofoolin
, a dollar bill that catches in the draft from the door and flits to the ground like a giant moth, a woman’s orange blossom perfume. I have tried to imagine what happens for him, something like a progression of notes: the voices, the shrill laughter, the siren out on the street, and most of all, the absence of jazz.