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Autism: Opening the Window
When a child is diagnosed with autism, everything changes, Including a mother’s sense of herself
Crash! I startle awake. It’s 1:30 a.m., and I don’t know where I am: crammed into a small space, still wearing my clothes, my arm asleep. Another thump, followed by maniacal laughter. I realize I’m on the top bunk in my boys’ room. “Computer, please! Computer, please!” my nine-year-old son, Aidan, gleefully shouts, catapulting through the air in his pajamas. He’s been jumping off the bed, using my legs as a launch pad. I stumble to the living room and open the laptop for him, but he wants to play with me. He’s like a hyped-up teenager at Coachella. My husband and other son are sacked out in our bed, refugees from the pandemonium unfolding in the rest of the house. At 4 a.m. Aidan dozes off, and I do, too. But he’s up again at 7. My eyelids are sandy, my skull feels like it’s fashioned out of a helmet of nerves as I kneel on the floor, wiping up the fresh coffee that Aidan has accidentally punted off a nightstand. By 10 we’re at the park among smiling moms and their squealing toddlers. Aidan crouches in an oak tree overhead, shirtless, barefoot, and crowing. A towheaded tot points up and screams, “Mowgli!” The tears stream out from under my big black sunglasses. I want to lie down on the hot concrete and go to sleep.
Every morning for the next three weeks Aidan will greet the day sometime between 3 and 4 a.m. Afternoon power naps become the key to my survival. One night he rests his cheek on mine. “I love you, Kate,” he says as I open my eyes. Before I learned that Aidan had autism, I imagined that mothering him would be filled with moments like this: kisses and hugs when I wasn’t screaming at him and his friends to Turn it down! as they shredded guitars during basement jam sessions, a sitcom-ready scenario of former rocker mom telling son to be quiet; me reading the poems he’s written, pondering his hilarious questions; feeding Fudgsicles and spaghetti to his crew of shaggy-haired Honeycomb Hideout pals. But Aidan’s childhood has been different. Which is why his early-morning cheek on mine is such a gift.
Once, when Aidan was two and autism was a scary thing that happened to other people, my vision of motherhood began in a sandbox. This particular sandbox was shaded by a canopy of wood beams and canvas. A clutch of toddlers worked away with pails and shovels while Aidan sat in the middle of it all, doe eyed and quiet, a perfectly behaved child on his first preschool tour. He carefully examined the wheels of a toy truck. There were Lucite blocks, child-size brooms from Ikea, and talk of the upcoming Sunset Junction street fair. This, I decided, was our preschool. The choice was unequivocal, easy, just like Aidan’s conception (first try on the Portugal honeymoon), his gestation (a joyful exercise in gluttony), and his birth (empowering). While I was a little stressed by the snippets of irony-free adult conversation floating around the snack tables, I was ready to be born again through my son, confident that he’d free me from the chains of my East Coast griping and teach me a breezier way of looking at life.
Other kids were running back and forth in a tornado of activity: superheroes, tea parties, battles over toys. I felt irritated by their nonstop chattering. “Mommy! Daddy! Look! Look!” God, they’re needy. Aidan, on the other hand, was completely self-contained, above the fray. He didn’t call me Mommy yet, but he could label anything. He was the king of nouns. When my dad pointed out that Aidan rarely looked at him, I snorted back, “Well, you just need to be more interesting!” My husband and I kept track of Aidan’s “firsts” in a beautiful baby book from the Metropolitan Museum of Art. In the section that asks, “What do you want for your child as he or she grows up?” I wrote, “I want Aidan NOT to care what others think of him!” He was already doing a beautiful job.
A few months later we’re moving slowly up the preschool waiting list. Aidan is running around on his tiptoes in our living room. He occasionally proclaims, “Dikka! Dikka!”—one of his favorite made-up phrases. Two therapists sit on our couch. This is a speech assessment we’ve requested from the state-funded regional center because Aidan, nearly three, still isn’t talking much. After an hour of shape sorting and flash cards, we’re feeling pretty good. He’s so smart—just quiet. Like his dad, like Einstein. “Do you see how he walks on his toes?” says one of the therapists brightly. We’d always loved this about Aidan—he’s graceful, a dancer, maybe gay like his beloved uncle? “That’s a classic sign of autism.” I am sitting on the piano bench facing the big front window, and suddenly I feel like I’ve been shot. There’s an all-over numbness and the knowledge somewhere deep in my brain that something has gone terribly wrong. My world, my idea of who Aidan is and who he will become, has imploded.
A developmental pediatrician (a job title I’d never heard of) will deliver the diagnosis: autism, in the moderate-to-severe range. “I wish you’d brought him in here a year ago,” she said matter-of-factly, “because the window is closing for him.” I pictured the window. It framed a view of sandboxes, superheroes, sleepovers. Was it really almost shut? Our regular pediatrician had been reassuring us for a year that Aidan was fine, boys are late talkers, and perhaps we could check his ears. We’d done everything right, only to hear now that this window, it’s only open a crack. I took these words to heart—in a hara-kiri kind of way.
The days following the diagnosis were a blur of Kleenex, Google, the phone. Good-bye to the Silver Lake Hipster Mom. I was hijacked, kicking and screaming, into the circuitous terrain of the modern-day AutMom, who, on top of parenting, must acquire a vast, varied skill set for a ridiculous range of job titles: advocate, therapist, dietician, red tape shredder, financial wizard, and LAUSD specialist, to name a few. I learn how to ask for therapeutic services and get them even when I am told no, that’s not possible, not in a million years. I feed my child no wheat or dairy and defend that decision to grandparents and strangers. I am a full-time chauffeur, speeding daily between the offices of specialists who work with Aidan to teach him to talk, zip, button, cut, follow directions, have those vitally important tea parties. I do all of this on four hours of sleep.
I live with an ever-present panic, which percolates under the surface, threatening to blow whenever Aidan wails in misery at the supermarket or a birthday party. I know him better than anyone, and yet I often can’t help him when he needs it most. This failure of mine—to please, comfort, and teach my son—only echoes what I fear was an earlier failure: some first domino that I allowed to fall at a crucial point in his neurological development. The pregnancy ultrasounds, the pounds of sushi I consumed while breast-feeding, the shots I let them give him. Which one? Which one?
But there is little time for grieving. Second home equity loan: How can we stop now? We are going to recover him! We do tests: blood, stool, hair. These will determine the vital nutrients Aidan’s sick system is lacking and identify the contaminants the environment has bequeathed him. The results are stunning in their detail, the levels of poisons in his body colorfully graphed for us like USA Today pinwheel charts. After much hand-wringing, we decide to chelate Aidan, which means we pay several hundred dollars for a few months’ supply of a sulfur-smelling lotion that we rub on his arms in hopes of leaching from his body the toxins that sicken him. Over three months Aidan grows miserable. He cries. He can’t sleep. He can’t function in school. The worst part is that he can’t tell us a thing about where it hurts. The latest blood tests reveal high levels of uranium in his bloodstream—proof it’s working! But wait. Why uranium? Was our house built atop a reactor? We’ve been at this for months, and all we know is our kid has gone nuclear. Or not. We don’t know what the hell to think. But at this point, if we were told his third eye needed a bifocal, we’d jump to get one.
When Aidan is almost five, we have a new baby: James. We had agonized over whether we could handle it—the sibling of an autistic child runs a 1 in 20 chance of developing autism. We decided that if our second kid had autism, we’d be well prepared. And Aidan would have a friend and accomplice as he traversed the strange landscape of the “neurotypicals.” For 18 months we watched and waited for signs: poor eye contact, a stronger interest in objects than people, repetitive play, delayed language? As James cleared these hurdles, the feeling was bittersweet. I was flabbergasted when he was 15 months old and picked up a ball, threw it to me, then waited eagerly for its return. At six his brother was showing no interest in that kind of back-and-forth with anyone.
Nothing yet has yielded a “eureka!” moment for Aidan, unveiled some ideal child beneath the autism. Instead it is I who have been revealed, rebuilt, and given a new way of not just seeing Aidan for who he is, but of seeing myself. The sleepless nights continue to rob our days of things we used to take for granted, like showers and decorum. But Aidan is talking more. We’ve found an amazing, progressive school for special-needs kids, albeit 50 miles away. He’s learning to skateboard. Right before bed, the best part of the day, the four of us read together, our limbs intertwined. James, meanwhile, brags about his big brother’s mad tree-climbing skills and occasionally asks, “When will Aidan stop speaking autism and learn English?”
One night not too long ago, Aidan looks up at me from his laptop with the same soulful gaze he had as a newborn. I kiss him good-bye as I head out the door for a rare night out. “Byekiss Iloveyou,” he chirps. James, pantless, bounds into the room and shouts, “I want the laptop NOW! Aidan, it’s MY TURN!” His older brother puts his hand out to block the inevitable body check. “It’s Aidan’s turn,” he replies as a sweet, slightly distant smile spreads across his face.
A window did close somewhere along the way, shutting out the shady canopy and the sandbox. But I can’t imagine being anywhere else now. We have arrived. We are here.
Kate Movius is getting her master’s degree in occupational therapy.
Read The Year in the Life of an AutMom, a selection of Kate Movius's Facebook status updates