Monday, March 23, 2009

Parenting a Child with a Disability - From Real Simple Magazine

I love it when other parents (who know how to write, unlike me) put their perspective about raising a special child into words like this...it's very powerful and yet it so true...the things we deem as accomplishments vs. things that really don't matter in my world.....this came across the FX Listserv I follow and I was drawn to it....enjoy! PF



Parenting a Child With a Disability

A powerful essay about parenting a child with a disability by Judith Scott, runner-up of the Life Lessons essay-contest.
by Judith Scott


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 2 1/2 (very late), and finally walks independently at 3 1/2 (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 four 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.
Our lives, my husband’s and mine, fill with the role of parenting a child with disabilities. We become champions of the cause,
joining groups, researching new developments, taking part as vocal advocates for our daughter’s rights. Sometimes this all
feels fine and we soar with competence, proud of the manner in which we are managing. Sometimes it chafes, this role for which
we did not volunteer, and we are quietly resentful, then guilty. My friends say they don’t know how I do it, my family say
they are so proud, and I thrive on the accolades, smile a bit brighter. But behind that smile, a ghost lingers, and the loss
of the perfect life I had planned sits heavy.

Before Emily, there was a woman who was a teacher and a wife and a friend. Now there is just Emily, and the woman struggles
for her bearings, tries to find her footing. I see this woman in the mirror one day and take a long moment to recognize myself.
It is time to find the “new normal” that will define my life. I search for the thing that will make the difference. At first,
it is running, the simple act of lacing up my Sauconys and hitting the road. Exercise helps and heals. Running segues into
racing, and although not an athlete, I train and plan and accomplish modest goals. Local 10Ks and marathons expand my world,
and I embrace it with unabashed selfishness.

Running makes me brave, and although life with Emily is still turbulent, I have a renewed confidence. Another daughter comes
along, followed by a son, born almost exactly 10 years after Emily. We cobble together a family, now not so much defined by
the disability within it but by the love despite it. Emily’s siblings speed through typical development without a hitch, gladdening
my soul and adding another layer of respect for my firstborn, who struggles so. The pain diminishes, and acceptance comes
in.

My husband and I always mock the fuss made over graduation celebrations. We wonder when graduating from elementary school
became such an occasion. Surely no one put on the ritz for us, back in the day. But times change, as they will, and the day
is upon us, as Emily nears completion of fifth grade. This milestone day is marked by students all dressed up, speakers who
wax nostalgic, and a video montage of the kids’ elementary-school years.

I sit in my cushioned seat, only half-cognizant of the speakers’ words. I wonder how Emily is faring backstage with her class,
lined up for the processional. Her full-time aide is there to assist her, but still I am anxious, twisting the program into
a wad on my lap. Finally it is her turn to cross the stage, and cross it she does, with a nudge and whispered directions.
From stem to stern, it is perhaps 100 feet, but Emily’s journey is more than that. The outgoing class stands to recognize
her walk; they cheer, holler her name.

Who knew that an elementary-school graduation, rife with its tired clich├ęs and tacky streamers, would crystallize all those
years of searching for peace? For now, in this moment, on this day, it is finally clear. I was mistaken. The albatross of
disability in fact turns out to be a strand of uncultured pearls, each in its varied imperfection a pure and precious gift.
No class I have taken, no country I have visited, no book I have read, has taught me more. This child who does not speak,
who does not fit in, who is different wherever she goes, is a lesson to me.

Click here for an interview with Life Lessons contest winner Aldra Robinson, along with her essay, A Witness To Grace.
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