Notes from Tutors

Colin’s ABA* tutors, at least a dozen in the last five years, play a singular role in his life, even the ones that come and go after a few months. Several tutors have watched him grow up, rarely going more than a week without seeing him, becoming more like family than tutors or babysitters. Colin and his tutors play and argue, even bringing each other to tears—intimate enough to hurt or delight with a mere glance. Quinn works with the tutors along with Colin much of the time. The relationships play out not just in our living room during ABA therapy but at horseback riding lessons, tag in the backyard, swimming lessons, or greeting a new puppy just adopted from the shelter, at birthday parties, wedding receptions, family vacations, and emergencies.    Continue reading

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Imaginary Countries

To keep Colin occupied at church, I hand him a dozen blank index cards and a ball-point pen. He works steadily through the hour, head bent over the cards. He writes with care and pauses between words. I can’t tell what he’s writing. I get caught up in the meeting. Afterwards, Colin presses the pen and cards into my hand and rushes to his Sunday School class. I put the cards in my suit pocket where they stay until I’m fishing for a pen two weeks later, and I find Colin’s list of imaginary countries, each name written on a separate card along with a cryptic description:  Continue reading

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The Dead-end of Blame

I made a decision and I know that was how it had to be, and I did not blame anyone.

                                              —Czeslaw Milosz, “Yokimura”

I.

In the first years after our son’s diagnosis, we attend only one autism conference. We’re not registered and don’t join any sessions. My wife Maura and I come to meet with a well known physician who is speaking at the event. We leave our son, Colin, and his brother, Quinn, with a baby sitter, thinking we will only be consulting with the doctor. On arrival we learn the doctor must “see” Colin in order to continue treating him from out of state. So we reschedule our consultation for later that afternoon. My wife goes to retrieve the kids and I find myself alone at the conference with an hour to kill. The conference people kindly allow me to wander in the exhibit hall at no charge.  Continue reading

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From One Spring to the Next

Quinn and ColinI have a notebook where I jot down—usually in the middle of the night—impressions about Colin’s adventures with his brother Quinn and his sayings. Here’s a sample from last spring to now. 

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The Music of the Spheres

Colin, our son with autism, fell into crisis at his brother’s birth—throwing more tantrums than ever, waking up at night, ignoring the usual comforts from us, and even refusing to eat. Such scenarios are common enough for children when new siblings arrive, but Colin’s singular reaction was a deep descent into his obsession with spheres, spinning, and the planets.   Continue reading

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What I Can Only Be Told

My parents tell me when I was an infant I didn’t cry in the morning but waited quietly in my crib humming and playing with my toes until my parents arrived. On random Saturday mornings when my father didn’t have to work and my parents wanted to sleep in, I slept in, too. Remarkably compliant, I would look over my shoulder just before I dipped my hand into a forbidden drawer for an ink bottle or some other irresistible object, as if I hoped someone would see me and stop me. My grandfather had never seen anything like this: “Is it possible something’s wrong with this kid, because he doesn’t act like other kids? I’m telling you.” When my younger sister was born—six weeks premature, only ten months after I was born, and nearly dying of pneumonia—she joined me in the small nursery, howling through the night hours. I slept through it all. At age three I closely observed and mimicked my adult models—once stretching out on the sofa with the open newspaper held above me. Another time I packed a suitcase and marched out my grandmother’s front door determined to rescue my father from basic training in San Antonio, Texas, 600 miles away. Well into my third year I would wait in my crib until my younger sister crawled out of her own crib, crawled into mine, and helped me escape. I was, in my parents’ words: “no trouble,” “a dream,” “a piece of cake.”

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What the Sky Diver Knows

Family Picture (2003) smallerWhen we entered the neuropsychologist’s office in January, 2004, our two-year old son, Colin, went straight to the crayons, puzzle pieces, marbles, board games, and colored wood blocks—moving from one object to the next, exploring the room, stopping only to squint sideways through the vertical window blinds or at the glimmering shadows they made on the floor—all this time ignoring the stranger seated in the center of the room, the one who watched Colin’s every move and listened in silence as we catalogued our worries about tantrums and biting and diarrhea and sleeplessness and incessant chattering and the lack of eye contact. The doctor looked at us only fleetingly with a distracted courtesy, until the moment, not ten minutes after our arrival, when he declared: “He’s autistic. I’m quite certain.” Continue reading

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One Boy’s Way of Knowing

I won’t skirt it—autism takes a whopping bite out of the natural sweetness of life—for both the one living inside it and the family living in its orbit. Autism also brings unexpected wonders. I’ll admit, I felt the bite long before the wonders, but once they appeared, I knew they had been there all along. In this narrative I will explore what I wish I had known at the beginning of these six years since my son’s diagnosis, and not at the end: about the shape of the days ahead, the deep roots of experience that had prepared me, how to distinguish between difference and disability, the imprecise art of suppression, the dead end of blame, the hard choice between action and activism, and the strength of calm. My son Colin, soon to be eight, continues to transform the lives around him with his courage, imagination—and his unequivocally original inventing of the world anew every moment, without self-consciousness, malice or vanity.  Continue reading

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