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A Daughter's Life with Autism
by Clara Claiborne ParkINTRODUCTORY
How to begin? In bewilderment, I think --that's the truest way. That's where we began, all those years ago. That's where everyone begins who has to do with autistic children. And even now, when my daughter is past forty...
This morning, at breakfast, Jessy reports an exciting discovery. It's a word. She doesn't say it quite clearly, but it's recognizable: "remembrance." "A new fluffy-in-the-middle! Found in the newspaper! It is fluffy in the middle!" Her voice is triumphant, her face is alight. "I saw one! With five on each side!" Leave that unexplained, in all its strangeness. For now. Shift to something less bizarre. Somewhat less bizarre.
Jessy is painting a church. Her acrylics are neatly arranged on the table beside her. With her sable brush and steady hand she has rendered every brick, every curlicue of the Corinthian capital, every nick and breakage in the old stone, accurately, realistically, recognizably. Except that the capital is a vivid, penetrating, astonishing green. The elaborate details of the stonework are picked out in shade upon shade of rose and violet and turquoise and ultramarine and yellow and green, a different green. The tower thrusts upward into azure sky. Into the blue (five shades, she tells me) she's introduced three zigzags, one above another, exactly parallel, zig for zag. Lightning, she says. She's painted lightning before, realistically, recognizably, working from photographs, since lightning, unlike a church, doesn't hold still for her to sketch it. But no one ever photographed lightning like this, so neatly angular, so controlled. "I invented it!" Happily she explains: it's what she sees when she has one of her brief migraine episodes. Migraine can be painless; Jessy is quite comfortable with hers. She points out that the zigzags too are colored: "Very pale mint, lavender, and yellow."
Very pale; to me they all look white. Only a scrutiny as sharp as Jessy's would notice a difference between them. Only a mind as free of conventional perceptions would make lightning out of a migraine illusion, or convert the dramatic disorder of nature into this orderly vision, or transfigure a deteriorating church with colors beyond the rainbow. Bizarre becomes original in the language of art, becomes surreal.
But Jessy's life, and life with Jessy, is not all strangeness. Indeed, it is less strange every year, more ordinary, more like other people's lives. We work, we shop, we do errands. So consider this recent incident, at the little post office on the island where we spend our summers. The parking lot is full. I'll park at the curb and rush inside while she waits in the car.
She doesn't like that. "We could ask someone to move so we can park," she says.
"We can't do that," I tell her.
She confirms this. "We can't ask them because they were there first." She was just hoping; she really does know the rule. She learned it years ago, when she asked some people to move from her favorite table and had to leave the restaurant. Now I counter-sink the lesson: "How would you feel if someone asked us to move so they could park?"
"Hurt my feelings."
Still, evidently, more work to be done. "No, it wouldn't hurt your feelings. Feelings get hurt when somebody does something or says something and you think they don't like you. Or criticize you." (This is getting complicated.) "It's not when they do something you don't like; then you get irritated, or angry. That's different."
That was a year ago. This week, at the supermarket, the lesson resurfaces. Near the checkout, I've met a friend; we get talking. Too long, thinks Jessy; the shopping's done, time to go. She waits a minute, two, then pushes our friend's cart with an abruptness just on the edge of aggression. She's caught herself, but she knows she's been rude. Later, as we talk it over, she plugs in the familiar, all-purpose phrase: "Hurt his feelings." Has there been any progress at all?
Copyright © 2001 by Clara Claiborne Park
Life is the garment we continually alter, but which never seems to fit.
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