A Special-Needs Parent Against My Will, Learning My Own Adaptive Lesson

Author: Ty Melillo Posted on: Monday, 01 June 2015 01:24 1271 Category: Latest News
A mother of a 3-year-old girl who had diplegic cerebral palsy, explains the emotions and thoughts racing through her mind as she watches her daughter dance in her first special needs dance recital.
I recently attended my 3-year-old daughter’s first ballet recital. It was one of the hardest things I’ve ever done.

She started taking lessons last fall, and it immediately became her favorite activity. She is a long and lean child; her body could be a dancer’s.

But hers is an adaptive ballet class, taught by a former ballerina turned physical therapist. My daughter, who has diplegic cerebral palsy as a result of a malformation of her cerebellum, is one of six girls in her Monday class.

Not a single pupil is fully ambulatory, and some, like my girl, cannot even stand unsupported. They are each assigned two volunteers who are buttresses at the barre, steadying their ballerina as she holds up an arm or points a toe.

During class, the windows are taped up so the parents and nannies can’t peer in and distract the dancers who, we’re told, are hard at work and need to concentrate. I’ve heard this is typical of “real” dance studios. The room next door is a sad mess of wheelchairs, walkers and other equipment, but the studio itself is a rainbow of tutus, scarves, slippers and smiles. The girls love it.

In hindsight, I’m not really sure what I expected of the recital. When the day came, I was a nervous wreck like any parent. I sat in the front row so my girl could see me, a bouquet of roses tucked under my seat. I worried that she would get scared. Maybe she’d refuse to go on. Maybe she’d forget her moves. Or fall.

People warned me I would cry, but I didn’t really understand what they meant until the music began and the curtains opened. At first she didn’t see me, and I was glad, because I was a tornado of emotion. I was happy. Proud. But was this ballet? I hated the ugly thoughts I was thinking as I watched dozens of children and twice as many helpers onstage while wheelchairs, walkers, crutches and legs — some, like my daughter, with braces to the knees — moved to the beat, sort of.

In her second scene, my daughter spotted me. “Hi Mama!” she called loudly from center stage, and I smiled. I blew her kisses and she blew them back like Miss America. She was radiantly beautiful and I loved her with all my heart.

In that way, I am no different from you. I love every inch of my child from the top of her sweet-smelling head down to her palsied toes. When it comes to getting her what she needs, I am a tiger. Advocating for her is a full-time job on top of the one that feeds my family, and I’ll sacrifice nearly everything for her.

But I did not have a name for what had happened to my daughter until a year after her birth, and it took me at least another year to come to terms with it. I am not one of those mothers who ooze altruism and gush about Mommy’s special gift from God; I certainly would not have chosen this.

A special-needs parent against my will, I sat in my seat, raging silently. It was a beautiful spring day. Shouldn’t I have been at the park with the other moms of 3-year-olds, teaching her how to ride her first scooter? I pitied myself for having to be in this audience instead and I resented the lifetime of special-needs recitals ahead of me.

And then I felt shame. As I watched my daughter alongside her peers, some of whom could barely move their arms or hold their heads up, I thought about their families. Were they thinking ugly thoughts too? I sneaked a look behind me and was shocked to find the house packed. I’d been wondering who goes to these kinds of events. As it turns out, lots of people do. Relatives, family friends and former therapists turned out in droves to support my daughter, who deserves every bit of attention she got. Didn’t the other dancers, too?

Through my tears, I got it. This event was a huge accomplishment. Some of the dancers may have needed every single Monday just to learn how to hold their arms up over their heads and point their toes at the same time. For others, a sustained smile or even eye contact with the audience might have been a singular goal. Likely many had to overcome the fear of being teased just to get up on the stage.

I looked at their faces: shining, sparkling, smiling. Who cared what their bodies were doing, really? How brave they were! This was a day (perhaps the only day) in which their disabilities didn’t matter. To this crowd, they were killing it. And how exciting it was for them to get to wear costumes and professional makeup and to be publicly adored by their families, their friends and hundreds of trusted allies. Allies, I realized, like me.

When the curtain fell, I leapt to my feet like so many others, applauding and whistling and reflecting the love that was coming from the stage and around the room. And for a brief moment, I felt fortunate to be there cheering them on.

What I learned in that moment was that it wasn’t about how much or how little those girls could do. Those girls were perfect; I was the problem. I still have so much to learn about myself and my journey as a special-needs mother. And it dawned on me that maybe that was part of the point.
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