Sleep

The bedroom door opens with a creak and a very young boy steps out into the darkened hallway. Just shy of three, this boy is tall for his age and sturdy in build, wearing multicolored pajamas that are too short for him.  He quietly steps to the landing of the staircase and begins to descend.

The house is new to him, and although he remembers the layout from the day before, his ears perk up at the unfamiliar sounds of the refrigerator humming and floor creaking. He makes his way downstairs, sidestepping moving boxes and hanging garment bags, and his eyes alight on the object he’s been coveting since he first saw it a day earlier; the spidery chandelier with hanging crystals shaped like teardrops.  He quickly climbs onto one of the chairs surrounding the table, and hoists himself underneath the sparkling fixture.  Standing at full height, he unscrews each of its half a dozen light bulbs and drops them to the top of the oak table, where the roll about and fall to the floor underneath. One shatters.

From table height he spies the peculiar machine he watches his parents use daily, and from which they pour large, tantalizing cups of hot liquid.  With no one around to assert the ubiquitous don’t touch, he noiselessly hops from the table and pads over to the counter.  He boldly pushes the button and watches the red light blink on. Then, nothing.

Unable to sustain his attention with this mystifying appliance, the small boy wanders a little around the first floor and finally meanders over to the double front doors.  Uninhibited by the child locks of his previous home, he easily turns the lever-shaped doorknob and steps wordlessly into the chilly April morning.  He crosses the front lawn in his bare feet, and holding his arms aloft, begins spinning to an unnamed song towards his new house, his new day, his new life.

The boy in this story is Jack.

With the evidence of broken light bulbs and a door flung wide open, we pieced together the chain of events that began with a silent toddler tiptoeing down the stairs and ended with Joe darting out onto the front lawn in his underwear. The rest of this narrative is little more than fictional interpretation.

At the time, Jack had only a dozen or so words in his three-year old cache of vocabulary. He couldn’t tell us what he was looking for on that cool April morning.  He never thought to wake one of us up for help navigating a house that was new to him.  And although his communication has flourished since our very first night in New Hampshire five years ago, he still can’t put words to this memory.

I was reading through some old material last week and came across this essay.  Originally, I wrote it as the preface to the book, but once we changed the first chapter to a letter, it didn’t really have a place as an opening. But I’ve always loved the idea of capturing Jack and his autism in a single moment of time; how stealth and self-directed he was.

How silent he was.

As many parents of kiddos with autism know, sleep is one of the many things this tricky disorder messes around with. Issues like interrupted circadian rhythms, irregular melatonin production, and anxiety all contribute to irregular sleep patterns and nighttime antics.

Now, let me put those two sentences into every day terms: autism can make a child wake up and go to sleep and wake up and call out and put Baby Einstein movies in the DVD player and crack eggs into a bowl and doze off on the floor and wake up again to start the whole thing over again. And once you smarten up and put locks and gates and alarms on every door and window in your tiny Buffalo house, he will just stand in his crib and bang his hands against the wall and repeat words like pancake over and over and over.

Basically, it sucks.That word is awful and I don’t like to use it, but it sums up the sleep habits of a small boy with autism perfectly.

At some point, Jack’s nocturnal wandering stopped, and it was replaced with early morning stimming; a hallmark of his anxiety. Around 4:00 am, he’d start  rocking and chanting in his bed as panic about toilets and fire drills and the wind chill factor raced through his 6-year old body, his wooden headboard thumping against the wall.

And now?

Well, these days–with the help of melatonin–his early morning anxiety is resolved, his sleep patterns more regular. Jack no longer wakes a hundred times a night or gets up to roams wordlessly through the house.

But he is an incredibly early riser, and to the dismay of six other people who live in our house, he is also incredibly loud early riser. We hear him slam-slam-SLAM-ing his dresser drawers shut as he rifles and searches for his socks and pants and shirt.

Then he bumbles down the hallway, muttering incoherently to himself about chorus and waffles and the capital of Idaho, bangs the door to our room open, and stands at the side of my bed, fully dressed, glasses perched high on his nose, until I open my eyes.

This happens between exactly 5:58 and 6:11 every morning.

When this first started about a year ago, I was annoyed. I tried to convince him to go back to sleep or snuggle with me or go to Joe’s side of the bed–anything to get just five more minutes out of the night.

“No,” he’d command.  “We are time to get up now.”

So I do. And he trails close behind me as I make my way into the bathroom, he perches on the edge of the tub and watches as I wash my face, pull my hair back. And all the while he talks.

In his robotic voice he asks about my makeup and reports that his new library book is boring and tells me how small Nicaragua is. His thoughts are disconnected and disjointed, and in the quiet darkness of morning, I can hear just how unusual his syntax is.

“Jack, why don’t you go make your bed why you wait for me?”

“Because no. I am hard at making my bed.”

But in those fifteen minutes or so before the rest of the family comes to life, Jack doesn’t have to struggle to keep up as words and sentences and laughter flow around him like warm, sticky honey out of a hive. He doesn’t have to wade through the bee-like buzz of confusing conversation, sorting through phrases and comments to decipher sarcasm and jokes and irony.

Every once in a while, if I stay quiet enough and don’t move too quickly, he will move past why is that lipstick up called desert sand and I do not like Magic Tree House to reveal the private inner sanctum of his racing mind. He will say things like this autism is stuck in me and I don’t know how to being around people.  He will reveal himself.

A few months ago, he sat with his long legs crossed and told me, “When I was born-ded, I didn’t know who you were. But then I looked. At you. And I said, that is her. That is my mother.”  And hearing him put words to a memory, I felt like the luckiest person awake in the world.

I felt like the unusual sleep patterns of autism don’t suck quite as much anymore.

Yesterday morning, I opened my eyes at dawn to see him standing over me, straight and tall like a soldier. Only this time, instead of his usual khakis and striped shirt, he was wearing his plush blue bathrobe.

“Jack,” I whispered in the gray light. “Why are you wearing your robe?”

“Because! I can’t want ,” he shouted at the top of his lungs. “I can’t want to wake anyone up by SLAMMING MY DRAWERS!”

He’s definitely not stealth anymore, I thought to myself as I swung my legs over the side of the bed and rooted around my closet for my own black robe.

But he’s also no longer silent.