Back to the Middle of It

Colin in choirMy son Colin has made such incredible progress in recent years. He’s in fifth grade, singing in a choir, playing piano, riding around on roller blades, speaking and singing in church, filling up journals with poems and songs, drawing, dancing, making more and more friends every day. It’s hard to believe how different his world was just a few years back. It serves well to look back to the middle of it–to see what progress looks like. So let’s look back seven years and see how far we have come:

Evening, June, 2007

The last light of another day comes through high windows into our basement bedroom that doubles as my office.  I sit cross-legged on the floor sorting through a stack of books, stirring up dust.  My five-year old son, Colin, bounces on the bed behind me. I’ve given up telling him to stop for the moment. He hears the sound of me talking but doesn’t respond to what I say until I’ve said it twenty times or say it with a hand on each of his shoulders, trying in vain to make eye contact with him. I can hear Colin’s chattering and the wheeze of the box springs behind me and I find myself humming along, in sync with Colin’s steady, sometimes musical noise.  It’s a ritual I have dreamed up to stay calm. Sometimes it works, sometimes not.

I won’t skirt it—Colin’s autism has taken a whopping bite out of the natural sweetness of life—both for him living inside it and the rest of us living in its orbit. My son’s autism is far from the extreme cases in the news. Yet, as millions of other families not in the news can attest, autism is impossible to ignore. Its inscrutable spectrum of symptoms and gifts enriches and/or pulverizes the lives it touches.

When Colin suddenly stops jumping on the bed, I look up startled, first to see his shadow on the wall. What strikes me is how his shadow moves with strange slowness. He paws at the air, balancing on one foot, while pointing the other foot out as if to test bath water with a toe before plunging in.  I think of a group of people I once saw in Hong Kong twenty years ago. They were doing Tai Chi in a downtown park, moving in slow synchrony, but at first I didn’t know what they were doing. I stopped cold, seeing something entirely new to me—beautiful and unsettling.  The world they moved in was a different world from mine. Or so it seemed.

I turn around now to see Colin staring at the rectangles of light coming through the small bedroom windows. The light catches the swirl of dust motes rising up off the books I just put down.  He kicks at the dust, holds still to watch it swirl, waits, kicks again, then reaches out with one hand. Colin doesn’t see me. His gaze follows the gold-lit particles, or sparks, or distant spinning galaxies, or whatever magic he sees. For a boy obsessed since infancy with the play of light; for a boy who could talk all night about stars and planets; for a boy who kicks up dust, or anything resembling it, at every opportunity; for a boy who drops cut grass in front of his face, staring sideways as it falls; for a boy who shreds tissues into tiny bits and throws them up in the air again and again. For this particular boy—these golden rectangles of moving light, always present but invisible until now—for him, this is a perfect vision.

Of course he would love this. It’s an image he was born to absorb and celebrate, though most of us would likely miss it altogether. How beautiful and at times isolated Colin’s world must be. For all I know these fiery prisms of light are alive to him, even singing to him. I marvel at him and his world. But it also comes home hard to me how far we have yet to go. Can a boy so enraptured in this moment’s play of light also learn to function in a classroom, talk openly to a friend, or understand what his friend says back to him? Can he live in both his world and ours? How can I be so certain that I see things as they are and he does not? There is no way to know.

Colin is just months away from Kindergarten. My wife, Maura, and I are apprehensive. People tell us that we have adapted well to our son’s autism. And it’s true we are accustomed his unusual obsessions, the way he shakes a crayon in his peripheral vision, chatters away about geometric shapes or tropical fruit, or the way he hums while staring into a running faucet. We have absorbed these things into our life, though we don’t accept them as permanent. These are things we’re told we must change. Or some would say extinguish. Yet, we have fallen in love with the boy and, without realizing it, fallen in love with the very behaviors we’re supposed to suppress. Perhaps we’ve adapted too well. But now Kindergarten looms. We have reached the point imagined for the last three years when we naively thought our struggle would be all but over. Now the balance we have been reaching for, living for—that this boy can be who he is and also learn to live in our world—may prove to elude us.

For a long time we don’t know what we’re missing with an autistic child. Colin is our first child. We accept the way Colin is as the way it is. Yet Maura is the first one to say the words no one wants to hear: Something is wrong. When his brother Quinn, two years younger, comes along, that “something” becomes more apparent every day. Take the day this winter when I was shoveling snow and a neighbor stops by to talk. Quinn comes out of the house in full winter gear, complete with his own small shovel. The next time I look down he’s leaning on his shovel just like me—exactly like me—with his legs crossed and looking up at our neighbor. I notice this because it’s something Colin has never done.  When the neighbor leans down to talk to Quinn, he does what I’ve seen thousands of other children do without questioning it: he smiles, then looks at the ground, sneaks looks at my neighbor from behind my leg, burying his face in my snow pants, then sneaking another look. Such gestures are so ubiquitous they go unnoticed. What you notice is their absence. Colin has never done any of these things. He doesn’t try to imitate what I do. For all his avoiding of eye contact for both familiars and strangers, I have never seen the expression of shyness on his face. Not once.

With both boys I play a hat game at bedtime. With Quinn, I put the hat on his head; he pulls it off and puts it on my head. We repeat this until I have five or six hats stacked up. All the time he looks at me, looks me in the eye, engaged. We laugh. With Colin, the game is the same, but it’s all about the hats. It’s as if I’m there only to deliver the hats and as someone to put the hats on. On the rare occasions when Colin does look me in the eye for more than a few seconds—it takes my breath away. His eyes look bigger than I thought they were, as if he has grown up a year overnight. His face is not as familiar as you would expect. His profile or the back of his head is what I see most.

Early this summer, Maura met the school district psychologist at Colin’s pre-school classroom to evaluate what his “educational needs” might be. He’s in a particularly distracted state, even for him. He breaks repeatedly from the class activities, prattles on constantly, almost shouting at times above the teacher. In a strange way he’s putting his “bad” behaviors on display at exactly the right time to help us convince the school district that he needs a one-on-one classroom aide for Kindergarten. The danger is that he will go too far and end up in the special education classroom, in spite of his ability to count in several languages, to memorize complex lists,  articulate his words perfectly, and read two or three years ahead of his peers.

When Maura reports all this to me, she has a hard time not laughing. “It’s like it was all planned,” she tells me. “There I was standing in the hallway with the psychologist talking about how Colin could be a flight risk, and at that very moment, I’m not joking, Colin comes tearing out of the classroom, screaming. He has his shirt off and he’s whirling it over his head.”  It’s easy to imagine Maura and the psychologist bent double laughing, then Maura hurrying off down the hall to intercept Colin before he escapes the building. Needless to say, he gets the aide.

Before school starts, while we still have time, several doctors warn us to experiment with medication to see if we can calm him down a bit, steady his focus, help him join his peers, so he can “mainstream” as they call it. We resist until the last weeks of summer, when we finally try several of the most common drugs. “They’ll either work or they won’t,” one doctor tells us. “You’ll know in a few days, or sooner.”  A friend at work overhears me talking on the phone and confides that Ritalin changed his life in a single day. He holds out the amber prescription bottle to show me. “It was like putting on a pair of glasses. Suddenly the world came into focus and I said, ‘Ah ha! This is how everyone else feels.’”

It wasn’t so easy with Colin. One medication after another fails. Late in August we make a final attempt. “This one really should work,” our doctor who specializes in medication for children tells us. “Give it to him in the morning and let’s talk in the afternoon.” That morning I watch Colin’s every gesture as I spoon the pills into his mouth with raspberry yogurt. I think: He has no idea what we’re doing. Swallow a mouthful of yogurt and all the lights turn on, the world comes into focus, the static in the brain stops—or not. I stand up to leave for work, but turn back into the room several times to watch him pace around in front of the TV, flapping his hands, doing his happy dance, laughing, reciting the memorized script from the movie, humming along with the soundtrack between punch lines. I can’t take my eyes off of him.  Now he is one boy and tonight he may be another boy entirely. During the work day, I force myself not to call Maura to check until well into the afternoon. She says, “Can I just tell you he has not stopped talking, not for one second since this morning. I mean not ONE second.” What I feel is the farthest extreme from disappointment. I’m ecstatic with relief. Then the next moment I’m guilt stricken. What’s the matter with me? Don’t I want him to get better? And the answer is: Yes, absolutely, of course. How could I not?  But right now I just want to get home and see my boy, the same boy I left at home this morning.

This is the knife’s edge we walk. We don’t know exactly what we want to happen. It may not be possible to know. We don’t have the easy answers. We have only our experience of a mystery. But there’s hope in the attempt. Shared experience can force memory to deliver up its secrets: the knowledge we need most.

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About slcantwell25

A writer focused on the transforming power of memory, autism, parenting, and the ways we know what we know.
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4 Responses to Back to the Middle of It

  1. Karen Cantwell says:

    Steve, I have marveled at Colin’s progress. I love his loudest, happiest voice and enjoy his comments about his latest interests. He loves life. No depression in that child. Keep up the good work you and Maura have done. You are both my heroes.

    Love, Grandma K.

    Sent from my iPad

    >

  2. Richard Oman says:

    I really like Colin. He is interesting and charming.

  3. leegee33 says:

    Steve,
    What a great post! Those meditations of yours are seven years old. I can’t believe it. I hope you feel as encouraged as I do when I read it. Colin has made such tremendous strides. It was particularly interesting to me to read your comment: “He never shows any shyness.” What a blessing. Shyness can be such a crippling disability. I’ve seen shyness create unbridgeable barriers between family and friends. Freedom from that challenge is a great blessing to Colin, a wonderful side effect of autism that we should allow ourselves to rejoice over.

    Your writing is so expressive and compelling. I love it.

    Dad

  4. Jane Luger - Jacobson says:

    I love your posts Steve! You and Maura are amazing. The boys are so blessed to have you both.

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