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Parenting a Child With a Disability

A powerful essay by Judith Scott, runner-up of the first Life Lessons essay contest.

By Judith Scott
Holding handsJoe Scafuro
As her name is called in standard alphabetical order, the little girl careens haphazardly across the stage, blinking in the harsh auditorium lights. Her gait is uneven and her orthotics squeak, but nobody seems to notice or care. Her eyes dart behind the lenses of her glasses, and her hands flap in excitement. A teacher guides the child toward the principal, who holds the diplomas. The child’s blond hair falls over her face as she grasps the principal’s hand in the semblance of a shake. A hush falls over the crowd as the girl progresses to the stairs, feels for the first step, and carefully descends. Despite the earlier statement to hold all applause until the ceremony’s end, this group cannot hold back. The clapping is thunderous, a whistle here and there, an acknowledgement of the gargantuan effort not only today but on all days. A mother’s sniff and gulp, tears not quite held back, will be heard on the video later on. That mother is me.
Emily is perfect to us, but by no other standards does she meet that criteria. From the moment of her conception, extra genetic material on one of her chromosomes renders her a child with disabilities across the board. That isn’t information our family can process in one fell swoop, so we chip away, day by day. We try to assimilate the unexpected into our lives. Medical problems abound, most beyond our experience or ken. First Emily’s tied tongue, which precludes her nursing, followed by other physical anomalies―a heart that needs major repair at seven months, abdominal surgery, then kidney surgery. But the carving and crafting of a more serviceable little body cannot hide the truth. Some things, despite our sincerest hopes, our most heartfelt prayers, our howls in an empty room, have no cure at all. For these things, there is only a pervasive sadness, then after a very long while, an admiration that sneaks in to surprise us out of our grief.
Our daughter’s youngest years are characterized by early intervention; a phalanx of specialists form a team to help Emily be the best little girl she can be. From the get-go, she’s a tough client, struggling against physical therapy designed to make her muscles more pliant, railing against the occupational therapist’s attempts to calm her. Emily’s iron will is a challenge, but a godsend all the same. Strides are eventually made, and hopes lift. When she sits at 10 months (late), attempts to communicate at 2½ (very late), and finally walks independently at 3½ (extremely late), we celebrate with guarded optimism. Despite the grim prognosis and the lack of hard data given at the outset, we see progress, albeit glacial at best.
“Special education” is an abstraction we cannot grasp, a phrase, like “global warming,” we know is out there but that doesn’t fit into our world in any tangible way. But now fit it in we must. Beginning with a toddler preschool class, special ed becomes part of our parenting landscape. It’s a program I’m glad exists for the sake of my child, all the while wishing it away. Teachers, like the doctors who shepherded us through the early years, cleave to Emily with plans, goals, and love.
Emily at age 4 is a beautiful child and medically sound after years of specialists and procedures. We are out of the woods in many ways. Her hair, silken and white blond, coupled with full cheeks, calls to mind a cherub. But the stares have begun, the curious onlookers who try to reconcile Emily’s normal appearance with the subterranean deficits and delays. What lay hidden before under the relative sameness of all babies is now self-evident. The difference shows. My daughter will not let me linger on the pain caused by these stares, though, choosing instead to laugh with glee at the simplicity of a playground swing or a sandbox or a silly song. She is happiness itself, unaware. She teaches me.
Emily begins kindergarten, and the trappings are the same as with any child: the bus, the backpack, circle time. I visit her special classroom, a room adjacent to the “real” kindergarten, where my daughter has respite from the overly bright lights, the fast-moving students, the constant dialogue. The stimulation so necessary to development is oftentimes too much for Emily to bear. It’s a fine line to balance the movement and peace, so we all veer from one extreme to the other as best we can. My heart contracts with pride as Emily learns her letters and masters a voice-output device, her mode of communication. But my heart also contracts with pain as I see the other children swirling on the periphery, capable of so much and with such ease.
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