Autism: Shedding the Spectacles
Call it the Wizard of Oz syndrome. Remember those cool glasses Dorothy and friends put on when they went to the Emerald City? Everything looks green and pretty because that’s how it’s supposed to look. We see what we’re meant to see.
God bless those spectacles. Without them, every blemish would look like skin cancer, every headache a brain tumor, every sniffle a sign of meningitis. Some parents forget to pick up their spectacles, or, through the cruel happenstance of fate, lose them. And life is never the same after that.
My girl not only hit milestones; she was brilliant. At twelve months she spoke her first word, then added hundreds more. Torrents of words. Multisyllabic words. Snatches of poetry. On a cold December day, when just shy of seventeen months, she passed me on the stairs and said: “‘As dry leaves that before the wild hurricane fly, when they meet with an obstacle, mount to the sky!’” I had read Clement C. Moore’s “A Visit from St. Nicholas” to her that morning.
She spelled words before she was two years old—C-A-T and F-O-O-D on the refrigerator, with magnet letters. By age five she knew her times tables and could read five-digit numbers. She loved music and books and had no interest in TV. She was, I told people, a pint-sized scholar.
I put down Arlene Eisenberg’s stopwatch. I knew my kid was okay. What a relief, because in my secret, shameful heart I was terrified of disability, and thank God I would never have to face it. Everything was working right. I strapped on my Oz spectacles, and no amount of money would persuade me to drop them.
Except my girl couldn’t really talk to you. She could recite poetry, in fact whole picture books, and sometimes snatches of random conversations. She was like a tape recorder that I accidentally turned on sometimes; suddenly, at dinnertime, my child would recite back my morning’s telephone exchange with the plumber. But she didn’t converse, couldn’t name a single friend at her preschool, couldn’t describe a favorite game or book. Her teacher said she liked building with Legos but insisted on playing alone. Once a block rolled out of her field of vision, and a helpful classmate handed it back to her; she took it without looking at him, as if the toy had appeared out of thin air.
Kids go through phases. Kids mature at different rates. Development is not a steady progression. These are the stock phrases parents hear and replay to themselves to calm their anxious hearts. “Don’t worry,” everyone says. “It’s nothing.”
The odd blip here and there usually is nothing. But when several blips appear consistently, even the most stubborn among us can see a picture taking shape, like colors and shadows emerging on a Polaroid. And this picture, incredibly, was looking ... strange.
At four years old, she wasn’t potty trained. The doctor said, “Don’t worry.”
She didn’t know how to use words like “yes” and “no.” The doctor said, “That’s normal.”
She didn’t talk to me—she gestured. She handed me books to read without asking me to read them, she put my hands on the juice carton when she was thirsty, she couldn’t look me in the eye.
The doctor told me, “Give her time.”
And I was convinced she was so brilliant that there couldn’t be anything wrong.
At one point, a freelance teacher named John started coming to the preschool to teach the kids computer skills—how to use a mouse, rudimentary keyboarding, and the like. I signed up my little Einstein right away. She excelled, as expected. But a few months later John’s schedule changed, and he had to quit teaching at the preschool. He called up parents individually to apologize and to offer his services privately.
I balked at the expense of private lessons. “I don’t know,” I said. “We’ll think about it.”
“You know, I’ve really enjoyed teaching your daughter,” John told me. “She’s such an interesting kid, only the second autistic child I’ve taught.”
"I’m sorry—the second what?"
In the space of my baffled silence, John backpedaled. “Oh, wait ... sorry ... your daughter ... She’s not autistic, is she?”
No. She’s not.”
“Sorry, I must be wrong. I’m thinking of another student.”
But, of course, he wasn’t.
I couldn’t see it in my daughter. And then, all at once, I could.
Tough times followed—arguments with teachers, pleas to principals, therapy appointments, tantrums, cold stares from the “good” parents I saw in the grocery store, cold shoulders from the ones whose child sat next to mine in second grade. And now, in her teenhood, we look to the years ahead as dark clouds bundling on the horizon. But all of that pales beside that moment of terror when I dropped those spectacles. My bragging rights vanished, sighs of “we dodged the bullet” silenced. Suddenly I stood in a quiet, new place, on the edge of a cliff on a very windy day, holding hands with my baby angel.
And decided to jump.
The jumping isn’t so bad. It’s the decision to do it, to shed that safety net of placations and excuses. Nothing is as bad as the anticipation, the indecision, the sheer breadth and depth of ignorance in the face of a huge and unknowable chasm.
But once you decide to leap, you learn as you go. We did, and we’re still learning. My daughter’s progress is at times breathtaking; when she makes the Honor Roll or sings an onstage solo, I’m tempted to think, “She’s catching up with everyone else. This is the end of the waiting and wanting.” But of course it never is. It’s only the beginning of the next phase, or sometimes, a discouraging backslide. I’ve learned not to be too disappointed, to expect some regression, with the hope of making net progress over time.
Every new school year is a breathless burst of speed around a rain-slicked racetrack. Long ago I threw my Oz glasses into the chasm. We face what everyone else faces. Middle school, high school, bullies, near-friends and true friends, parties and clubs and first dates and learning to drive—it’s uncharted territory for every parent, different for every child. And different for us, as we face each new canyon, hand in hand, trembling on the edge.
We jump. With our eyes open.
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