The parents almost always have a hard time leaving, Natasha had cautioned me on the drive over. They aren’t accustomed to being able to trust their child with anyone. Even in the public schools, there are enough horror stories involving disabled children, especially those without speech, to discourage any parent. On top of that, they usually feel guilty for taking time to themselves. Necessarily, it feels like time they are stealing from their son. Some degree of selfishness is required for survival, but that is a hard sell to parents who have been forced to subjugate their own needs to their child’s from the hour he was born.
I’d expected to experience that now-familiar surge of rage when I came face-to-face with these people, but I’d surprised myself.
Details, details.
The bleak expression in the dad’s eyes as Natasha cheered their movie plans told me he didn’t expect to finish the show, much less dinner, before they’d be back. The way he watched his wife like he was watching a ghost flit across the shadows of memory. The way he picked up his wallet and phone like a man picking up his armor and reminding himself of his own identity. The way he almost placed his hand in the small of her back on the way out the door and then didn’t.
The lines around the mom’s eyes that seemed more suited to someone my age than a young mother in her twenties. The way she twisted her fingers over and over instead of taking her husband’s hand. The long, handwritten list of directions and contact numbers she pressed into Natasha’s hand. The way she looked at the son who didn’t look at her.
Ten across: four letters, corn syrup, Byron’s taboo lover
I felt, powerfully, that there had been some loneliness that Ada had missed.
Jared.
That was his name.
He didn’t answer to it, as far as I could see.
But what I was seeing wasn’t relevant here. I wanted to know what he was seeing. He was seated on a beanbag chair at a low table. Not table … sand box, really. His mom had handed him a pitcher of water just before she left. Watching his hands flap seemingly uncontrollably, I’d fought the urge to rush forward and keep him from spilling the whole thing on the floor, but when he lifted the plastic pitcher, his hands were slow and steady. The eyes that had been darting around the room now focused on the slender trickle of water he carefully poured into the shallow depression he’d scraped out in the sand. I was transfixed along with him, watching the water as it fell down, welled up, poured over the edges of the little sand banks.
I lowered myself onto the floor on the other side of the sand table. Natasha had warned me not to move too fast or too close. I thought of the Little Prince and his taming of the wild fox.
One only understands the things that one tames.
Because you wasted so much time on me, you made me feel very important.
To me, you will be unique in all the world
Antoine de St. – Exupery
I thought I had tamed Ada. I knew she had tamed me. Could I still be unique if the only eyes that had ever seen me were closed?
I cupped a handful of sand and let the silken grains slide across my palm, a mirror to the thread of water on Jared’s side of the table.
Slowly his eyes lifted and fixed on those grains.
“My name’s Jeff,” I told him.
His eyes didn’t flicker.
“Both our names start with the same sound,” I said inanely.
His pitcher was empty. He held it out to Natasha without looking at her. Swiftly she took and refilled it, handing it to him with an apologetic smile directed at me.
“Autistic children have a tendency to see other people as tools they need to use to accomplish what they want. Empathy comes naturally for most of us, biologically really, but for them it’s very hard-learned. Respite care isn’t the place for those lessons, though. That will be addressed in play therapy and the like. We just want to keep him feeling happy and safe so his parents can enjoy a little time to themselves.”
Irritation flashed. Natasha reminded me of the aides who had worked in my grandmother’s nursing home when I was young. I hated going to that place, but every week like clockwork my parents dragged me there. I remember the aides coming, emptying her bedpan, changing the soiled sheets, complaining loudly about the filth in between their volleys of gossip. Grandma couldn’t talk, of course; she was there thanks to a catastrophic stroke. I remember accidentally making eye contact with her as they flipped her onto her side like a rack of lamb and wiped down her ass.
Drool had wisped down from the left side of her mouth. Her thin, gray hair tufted out around her ears like the downy feathers of a tiny baby bird. She was just that fragile, but not that new. And those eyes …
I had expected dullness, vapidity, an absence of coherence.
Her gaze caught on mine like a lifeline. Desperation, rage, shame so deep even a boy of ten could see it.
In that moment, I had realized there was a whole person trapped inside this rotten cocoon that we called Grandma, a person without hope or recourse, a person who saw me as a person, too.
I don’t remember the details of what happened next. I remember it was loud and probably violent. I remember that my parents didn’t take me to the nursing home again. The next time I saw Grandma, it was just that rotten cocoon after all, stuffed and painted to look like another Grandma I didn’t know and sealed up in a box like the butterflies.
For Jared, the story would be different. I hoped. I’d done a little reading to prepare for my field trip, of course. Most autistic children did make progress toward the world the rest of us take for granted. Some acquired speech, some did not. Some learned to give and accept physical affection, some did not. Some grew to be brilliant, successful adults who could pretend to interface with society as well as the rest of us pretended to. Some became old people whose older parents clung to life as long as possible, terrified of what would become of their child alone in the world without them.
Jared tilted the pitcher. I scooped some more sand. I watched the water slide down. He watched the sand, sifting between my fingers.
I imagined a quiet, beautiful cathedral, all the outside sounds muffled, the sunlit colors of the stained-glass windows muted and aglow. The heavy wooden doors were bolted, barred, and locked. Music hummed in the air, never clamorous or jarring. The only path to the outside world lay through those windows. Break the glass, destroy your many-colored vantage that protected more than it revealed, and the brilliance of the sun would come crashing through. The harsh sounds of the street, the many feet, the many voices, would flood through. Who would want to break that window?
“Can I have some water?” I asked.
Jared tucked his chin in a gesture I recognized as assent and reached across the table. He held the pitcher steady, but did not pour.
It took me a moment to realize what he was waiting for. Quickly I scooped out a little sand pond to match the ones he had dug. As soon as I finished, he poured a small amount into the impression and waited again. I used the wet sand to build up the banks, pressing my fingertips into the edges. When I had finished, he resumed pouring, a slow regular trickle that filled the pond and ran down the outside of the banks. Then he refocused his attention on his own work as if I didn’t exist at all.
Natasha had seated herself on the edge of the couch. “You’re good with him,” she said approvingly.
“He’s good with me.”
Her startled laugh grated at my ears. “Are most people not?”
I reminded myself that I was here as a guest. As a favor.
“Oh, no. All I meant was that I appreciate you letting me into your space, Jared.”
Maybe if I made a point of speaking to Jared, instead of about him, then she would follow suit.
“He is a funny little guy,” she concurred cheerily, and without observation of my efforts. “You can’t make the mistake of assuming that lack of spee
ch implies lack of intelligence. He’s got a lot going on behind those beautiful blue eyes, don’t you, Jared?”
Okay, be careful what you wish for. I’d rather she hadn’t addressed him directly at all than talk to him like a puppy.
Natasha moved into the kitchen, loading and starting the dishwasher before beginning a load of laundry. “It’s not absolutely required,” she explained over her shoulder as she worked. “But most of us try to take care of whatever small chores we can while the family is out. It’s not worth taking a break if housework has just piled up while you’re gone. And we want them to take breaks. The whole family needs to stay healthy, not starve themselves in order to feed the needs of one member.”
I couldn’t think of a polite way to tell Natasha to shut up. Jared kept his eyes down, focused on water and sand, sand and water. Back and forth he went between my little pond and his own. Over and over we practiced the same moves, ’til nearly two hours had passed.
Natasha disappeared down the hall, and then I heard the last thing I expected … some kind of unholy death metal, German from the sounds of it.
Natasha emerged with a grin. “Didn’t expect that, did you?”
At the sound of the music, Jared had cocked his head and slowly began scraping down the banks of his pond, leveling the sand with his palms.
“Umm, no. I did not. What is it? I mean, I know what it is. Why are you playing it?”
“Every autistic child is wildly different from each other, but at least one thing applies to them all―they hate transitions. Even small changes we take for granted, like shifting from one activity to another, can be catastrophic for them. Jared’s parents use music as a physical, nonthreatening cue that bedtime is coming. You see he understands. He’s getting everything put back in a way that is comforting to him. When he’s satisfied that everything is in its place, he’ll put on his pajamas and come to bed on his own.”
That sounded easier than most little kids I knew who weren’t autistic. Of course, when I thought that, I wasn’t aware that it would take Jared another thirty minutes to place every single grain of sand back in the precise place he wanted. As someone who had nowhere else to be, though, I found his single-minded determination oddly soothing.
“Believe it or not, that death metal is calming to him. He sleeps with it on all night.”
I raised my eyebrows. “How does everyone else sleep?”
“Everyone has to make adjustments when you have an autistic child in the family.”
I thought of the daughter, twelve years old to her brother’s nine. I wondered if she would dread coming home later tonight, or be glad to be back in her own little ordered enclave where sound, every texture, every light, every color had a purpose. Even if that purpose was just keeping her little brother from having a meltdown.
Jared stood up, the fingers of his left hand tapping gently on his sweatpants. He headed down the hallway with a slight list.
“Can I tell him goodnight?”
Natasha nodded. “No hugs or anything like that.”
No danger of that. I might have admitted to myself that I felt an odd connection to this strange small person, this world locked in a person, this sun trapped in a cathedral, but that didn’t mean I wanted to hug him.
His room was small, with no fewer than three nightlights positioned on every wall but the one that framed his bed. More lights, plastic glow-in-the-dark stars, were plastered to the ceiling. His mattress lay on the floor, with no headboard or frame. I couldn’t make out the pattern on his coverlet for all the pillows and stuffed animals that littered its surface.
“You’ll need to tuck him in,” Natasha directed me from the doorway. “Nice and tight. Otherwise, he gets scared.”
That made a weird sense to me. Our souls drift away from us when we sleep. I could imagine this small boy lying along in the twilight-dark, feeling the pieces of himself that he fought all day to keep together floating out of reach. I’d want to be tucked in tight, too. To feel something stronger than me against my skin, holding me together, holding me in. Promising me that I would never float off into those stars and be caught in winds I couldn’t escape.
Jared had changed into his pajamas. Footie pajamas, I saw with bemusement. I didn’t know they still made those. But this way he was wrapped up tight. He didn’t have to worry about losing a foot or a toe down in the mystery of the blankets.
He still hadn’t looked me in the eyes.
He slipped under the covers. I grasped the sheet and coverlet and pulled them tightly under his arms. “You want your arms out?” I asked him.
He didn’t answer, but he began pulling his pillows and toys closer to himself, so I took that as agreement. I helped him construct his fort so that he lay in his bed like the water had lain surrounded by sandbank walls.
This was novel. I’d never tucked in a child before. I couldn’t imagine that I would ever do it again.
“Good night, Jared,” I told him as quietly as I could over the pounding of the death metal.
I rose to go, but he seized my arm in his left hand. He extended his right hand toward me, and for the first time, I saw that it was fisted, as if holding tightly to a treasure.
Unsure, I opened my palm beneath his fist.
Tiny golden grains of sand dribbled into my hand.
* * *
Of course I’ll hurt you. Of course you’ll hurt me. Of course we will hurt each other. But this is the very condition of existence. To become spring means accepting the risk of winter. To become presence, means accepting the risk of absence. – de St.-Exupery
* * *
Jared’s hair wasn’t golden, of course. And I don’t spend a lot of time staring at wheat fields like foxes must do. But now sand always makes me think of cathedral light.
Virgin To Join Growing List Of Extinct Airlines
I think emotional adrenaline is a thing. When something terrible first happens, there’s this surge of determination to make it through, to get past it. Getting past it might not look like healthy behavior from the outside―it’s often reckless, self-destructive, even irrational―but at least it’s forward momentum. Gradually, though, that emotional adrenaline drains away, and you realize there is no getting past. There is no through. There only is. And is, the atrophied state of all that could have been, holds nothing at all.
All the will, the power you had to endure, was gone. But the endurance itself remained, a bitter persistence of spirit.
For sale: Four plots in the Orchard Mesa Cemetery, $1000 each
Sunday’s euphoric rush had long since faded. Tuesday morning I’d shaken the sand out of my pants and written a little four-inch blurb on respite care and how to contact resources in the community. A smiling photo of Natasha opening the agency’s door took up more room than the article. It wasn’t like me to commit an entire evening to a story whose content I could have culled entirely from the Internet, but I wasn’t in the mood to turn Jared or his family into a curiosity piece.
I wasn’t in the mood for much of anything.
Oh, I went through the motions. I parried with Dayla, dropped by Bonnie Mac’s office for my weekly update on the town gossip, I assigned stories to Jack, Sami, and Delores. I even called Belichek’s accounting office to let them know how well our new advertising venture was going. They were so impressed, they said they were going to share the idea with Belichek himself. The big papers couldn’t play the game quite as transparently, but for local weeklies like The Herald, imbedded advertising might be the only route to survival.
I brought in my stack of papers and pasted more headlines on my wall. I’d long since outgrown the space over my desk and was steadily creeping toward Dayla’s space. She’d given up trying to decipher what I was up to. I tried explaining that I wasn’t up to anything. I just wanted a clear picture of the stories we are being told and the stories we are telling.
E
ight High-Ranking Russians Dead In Five Months
Some of natural causes, of course. But the number sticks.
Of 500+ Children Reported Missing This Year In DC, Less Than Two Dozen Not Found
Now, that’s no headline. That’s the truth buried at the bottom of the article. But for someone, it is more useful to convince the American public that we have five hundred missing children in DC, mostly girls, mostly black, for whom no one is looking.
The question is for whom? I used to believe we were all just playing the ratings game―throwing out the most sensational headlines and stories we could sell to the most papers, so we could do it all again next week. But the experiments of the last couple of weeks have shown me how ridiculously easy it is to act with more volition than mere greed. The public is so eager to be told what to do, who to hate, who to idolize, that even the subtlest of pushes in the desired direction quickly yields results.
Look at the financial papers. Every week, a story is published in which some economic expert lauds “the one stock you absolutely must buy” or sell, or whatever. Simply publishing the story fundamentally alters the status of the stock so as to render the article entirely obsolete before the end of the afternoon. That is if you even first assume that the purpose of the article was truly that some millionaire altruistically wanted to share his hard-earned knowledge of the market with you so you can be a millionaire, too. But hey. Maybe you believe that. Plenty of people must, because the stock soars like clockwork every time.
In the same paper, I can read stories about ISIS calling for lone wolf murders, about terrorist attacks in multiple European countries, the bullying efforts of Iran against our navy, increased violence in the West Bank and Netanyahu’s calls for a harder line, and a feel-good feature about how Jews and Muslims are coming together to fight intolerance. Are all these stories equally true? What stories are not being told at all because they don’t fit into the agenda?
And what is the agenda? It seems to shift from week to week. For years, the only time the mainstream newspapers quoted George W. Bush was to highlight one of his particularly clumsy turns of speech. Now everyone wants to use him as the experienced voice of reason to counter the latest madness spilling from the current president’s lips.
Revised Bury the Lead Ebook Formatting Embedded Cover Page 10
