Title: The Shape of the Eye
Subtitle: Down Syndrome, Family, and the Stories We Inherit
Author: George Estreich
Length: 224 pages
Finalist for: Favorite New Special-Needs Memoir
Message from the Author: "The Shape of the Eye is an at-home dad's memoir about raising a daughter with Down syndrome. In it, I tell my story, my daughter's, and my family's, while exploring the way we talk about Down syndrome and disability."
Excerpt from The Shape of the Eye:
It's been another dry, eerily mild winter, like the year Laura was born. The reservoirs draw down; vast wildfires are predicted for the summer. The daffodils come up three weeks early. Laura and I sit on the sidewalk, waiting for the bus to take her to Dixie School, where she receives special education services in a classroom setting. She's four years old now, old enough to ride the schoolbus on her own.
I write a T in white chalk on the concrete. I say, "Laura, can you trace T?"
"Per-puh," she says, and I hand her the purple chalk. She traces a ragged T, like a shadow cast by mine. I am so happy, saying, "Yay Laura, yes!" She pumps her fist and says, "Ess!"
She's speaking more clearly now. In the fall, she had tubes placed in her ears to correct a moderate hearing loss; her tonsils and adenoids came out too. Soon afterwards, her articulation began to improve. We noticed it particularly in the vowels: long a, short a, o and oo. Debbie McPheeters, then Laura's speech-language pathologist, speculated that the reason she'd always done better with consonants -- p, b, m -- was that she'd been lip-reading. You can't see the difference between long and short a.
But Laura still found speech difficult. Her solution was to use the same word for multiple meanings -- bop, for instance, could mean pizza, stop, or potty -- and clarify the different meanings with her hands. Saying bop while signing eat meant pizza; while doing a karate chop against the palm, stop; while patting her rear, the elusive but slowly improving potty. At some point it struck me that Laura was signing while she spoke, exactly the way Pat Hill had shown us how to do years ago, when we hardly knew what Down syndrome was.
I hear the familiar diesel engine, and the yellow bus trundles around the corner and pulls up in front of the house. I say hi to the driver, lift Laura into her seat, buckle her in, kiss her, and tell her to be good. As the bus pulls away, she is waving to me from the window.
Four mornings a week, Laura attends a second preschool—the Oregon State University Child Development Center, known also as Bates Hall. Laura is the only child with Down syndrome there. At Bates, Laura receives no services, but she is learning how to be with other children, and they are learning how to be with her.
One morning I arrive early for pickup. I go inside, sit down in the Observation Room, and unfold my laptop. Over the glow of that day's searches, I watch Laura through a wall of one-way glass. It's time for Large Group, and the class is singing "The Wheels on the Bus," Laura's favorite song. Laura sits on her carpet square and rotates her fists one over the other, backup-singer style, for "Round and Round," claps her hands together for "Open and Shut," swings a thumb up over her shoulder for "Move on Back." She loves Large Group. At first she needed someone to sit behind her, but she knows the routine now.
That Laura is part of the group, that she sits cooperatively on her carpet square, is an achievement. Shahrnaz Badiee, the dark-haired, brisk, affectionate head teacher, has made it her business to teach Laura how things work, to hold her -- insofar as possible -- to the same standards as other children, and to help the other children understand her. Shahrnaz is one of the many adults without whom inclusion would be a meaningless word. To include a child like Laura is not necessarily difficult, but it does take commitment.
After Large Group comes Small Group. Laura is not cooperating. She is staging her sit-down strike, refusing to go to the Library Area. Laura says anh, reaches for the sky, denying the handhold of her armpits. I start to get up, to go inside and intervene, then think better of it. Shahrnaz comes over, talks gently to Laura, then firmly lugs her to Small Group. The Library Area is directly opposite my chair. Laura makes faces at herself in the mirror, gesturing, in one of her hermetic stories. It looks as if she's talking to me.
I fold up the laptop and unplug it and put it away, and then I sling its weight over my shoulder. I leave the ambery twilight of Observation; the classroom is bright and loud. Shahrnaz says, "Look Laura, look who's here!" And Laura barrels across the room towards me, in the way Ellie used to, when she went to Bates Hall. At nine, Ellie is far too old for public hugs. Laura, however, is still incapable of reserve. She throws her arms around me, the best part of the day. Then I take her to the potty, and we go outside to the tire swing.
I have acquired a minor fame at the Bates Hall playground, where, for those kids who sit on the swing with Laura, I do the full-on clown routine. I pretend to get knocked down by the swing, then do somersaults and come up covered with bark chips. I pretend to take naps until the kids wake me up with their screaming. I pretend to misplace the children. "Lara, Olivia, Laura," I say, "where are you?" Their orbit decays. I search for them in my wallet and under the bark chips. When the screaming gets too loud -- "WE'RE RIGHT HERE," with Laura echoing, "ERE" -- I discover them, then ask why they didn't say something earlier.
It is the way I play with children when I am not depressed, but it is also a calculated game of inclusion. Since it is about momentum and silliness and screaming, and not, say, numeracy, Laura's deficits become temporarily irrelevant. Besides, I'm happy to embarrass myself for her sake. If the kids associate Laura with Fun, Laughter, and Incompetent Clown Dad, that's fine by me. It beats the hell out of Weird-Looking Kid Who Can't Talk.
I say, "Okay, guys, five more minutes!" We have to get home in time for the bus. The kids protest. I give them a last push and they scream with happiness. Laura is screaming too, saying, "ZOOM! ZOOM!" The other kids think Laura is saying zoom because they're going fast, so they say it too. But Laura is saying zoom because zoom is how Laura says more. It was Theresa who figured out the etymology. In daily life, we don't say "more"; we say "some more," as in, "Do you want some more O's and milk?" Laura chose, for whatever reason, to contract the phrase to some, which she pronounces zoom. We say, "Laura, look at me. MORE." "ZOOM," she says. She likes it. We know what it means. She owns zoom. In general, it is difficult to sway her, once her mind is made up—though what looks like stubbornness, may only be a difficulty in changing course.
We say more, and it comes back zoom; we say TV, and it comes back Bobo. The etymology was, again, complex and personal. Bobo was Laura's best pronunciation of Elmo, which stood, in general, for TV. Therefore: Bobo = TV. Bobo could also refer specifically to Elmo, in the way that bread can denote either bread or food in general. Give us this day our daily Bobo. We spent a lot of time clarifying which Bobo Laura meant, how much Bobo she could have, and whether she could have chips along with Bobo. Sometimes, to make her case that Bobo should be allowed right now, and in unlimited quantities, Laura would drag out the old invented sign for TV, flicking her fingers beneath her chin. We said no, signing for emphasis. Or we caved and agreed. We consented, in every way, to her terms.
Since the beginning, she has been teaching us. She translates our messages; we retranslate the translation. We say zoom and Bobo. We say oop instead of oops: Laura, for reasons of her own, deleted the trailing "s." Others learned her language too. Lara, a tire swing regular who had become something that once seemed as improbable as a unicorn—a friend—had begun saying "Da" around the house. When her father asked what it meant, she told him, "That's how you say yes in Laura."
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