Inside the Big Umbrella
I earned my first part in a play just by raising my hand.
"Who wants to be Snow White?"
That is how I became the lead of Willow Lake's 1987 camp production. There I was: singing, dancing, and kissing Josh–a first grader. What kind of magic was this?
That night I went to bed very happy.
I was fortunate to have parents that noticed my theatrical interest, even at age five. Next stop, tickets to Into the Woods on Broadway. Bernadette Peters opened her mouth, I turned to my sister and said, "She has hair like us," and then didn't breathe for the next two hours.
I discovered a new home. A place to capture my energy, imagination, and desire to belt out a show tune. Like so many others, I collected enough tee-shirts from my theatrical productions, I could make a quilt for my children.
I never wanted to do anything else. So I didn't.
Theater invited me to examine the world. It introduced me to empathy. It introduced me to aspects of myself. Perhaps most important, it introduced me to my husband.
When we both graduated with master's degrees in Educational Theater, we knew we were starting a journey together with theater as our foundation. As practitioners and patrons of this work, there was not one aspect of our lives that theater did not touch.
While my performance skills these days are reduced to keeping 9th graders awake during first period and singing lullabies to my children, I remain dedicated to seeing theater. In fact, when life gets hard, I make a point to see more of it. I transform into that five-year-old girl. The lights dim and I am only surrounded by a hushed silence. I am transfixed. I am mesmerized. I am elated.
Unfortunately, this is the very environment that is impossible for my daughter to experience.
My daughter has a rare developmental disability called Cri Du Chat. She has defied expectations. Where she was once never to walk or talk, she is often having a dance party, singing with her shadow. At three, her special education teacher voted her most likely to become a pop star. If the love of theater is genetic, this child got all of it. However, the deletion of her 5th chromosome means we cannot take her into a traditional space. The dark is too scary, the sound is too loud, and the concept of "a hushed silence" is frankly preposterous. Although we are thrilled there are more sensory friendly opportunities, it is still too overwhelming for my daughter to access the arts in this traditional way.
Seven years in, my husband and I have accepted what it means to raise a child with special needs. We have learned how to manage Indvidualized Education Programs, rude comments, and even our own expectations. However, what have never quite come around to is how heartbreaking it feels to leave her with a babysitter while "mommy and daddy see a play." Not because we can't be together but because we can't share something with her that feels so foundational to who we are as her parents. We have been resigned to the fact that we would never get to see a play with our child.
Until I received an email through the Special Education PTA in our town. The students with disabilities were taking a field trip to Lincoln Center to see a new play, Up and Away, as part of the Big Umbrella Festival. Although the production was labeled for children on the Autism Spectrum, and my daughter has a chromosomal disability, it seemed like just the solution we were looking for. From my initial phone call to the box office, I could not have been treated with more kindness. Thoughtful strangers assured me the design of the show extended to any individual who benefits from reduced sound, sensory experiences, interactive role play, and thoughtful transitions. They even sent me a copy of the music so we could preview it beforehand.
And because of this, my husband and I saw a play with our daughter.
We entered the space with trepidation. I had packed a bag with every possible tool I would need in case of a meltdown. The elevator doors opened and I imagined her face would light up seeing the colorful umbrellas of the Fogg family. Nope. Instant wailing.
"I want to go home!"
It was only $25.00 tickets. We could just go home. We tried.
A friendly face in a pink costume appeared. "Hi. Are you Jordan? Ariana Grande told me you were coming."
Like magic, my daughter wiped her face, smiled, and said, "Hi." She grabbed the arm of her new best friend and the two of them disappeared to touch fluffy clouds.
My husband and I were dumbfounded. I had filled out a pre-show questionnaire but I didn't expect the actors to read it, let alone memorize it. But this actress was prepared with exactly what Jordan needed to transition: a pink ensemble and a personal invitation from Ariana Grande.
When I realized my daughter was not just fine but thriving, lying on her back looking up at the sky, I allowed myself to notice the other families. It was as if we all had the same thought: "We can allow our children to be themselves here."
When you parent a child with extreme sensory issues, you are always just waiting for the next outburst. I didn't realize how exhausting that was until I could be in a place where I could let it go. In this theater, "you cannot do that" didn't exist. It was so thoughtfully designed, it looked effortless. Meltdowns were okay, talking to the performers was okay, and even jumping out of your seat to touch the props was encouraged.
An audible "wow" escaped my daughter's lips when we entered the room. We were surrounded by hot-air balloons, floor to ceiling. By now, Jordan was familiar with the entire cast and the plot of the show, as a result of the company's artful transitions to move the children slowly into the space. Jordan and her pink bestie were paired for the remainder of the production. The actress seamlessly transferred her attention between her lines and my child. When I realized my daughter was not just fine but thriving, lying on her back looking up at the sky, I allowed myself to notice the other families. It was as if we all had the same thought: "We can allow our children to be themselves here." And when the tears rolled down my cheeks, one of the actors passed me a tissue. That's how observant they are.
Theater does not have to be a story that we just sit and watch. It is an experiential process that allows an individual to move forward, even if it is just by degrees. Today my daughter was able to look at art in a way that was available to her. Today, she was encouraged to dance with someone besides her own shadow. Today, we didn't have to be a special needs family, we just got to be a family.
As I put her very exhausted body to bed tonight, and tucked her in with the light just right and her fourteen stuffed animals, she quietly whispered, "Mommy."
"The play made me happy. I felt powerful."
"Yes, honey. Me too."
Leah Moore has taught English and Theater in New York for more than a decade. She was the 2009 "Teacher of the Year" presented to ten New York City Teachers annually. She and her husband live in Westchester with their three children: a dynamic seven-year-old girl with Cri Du Chat, and energetic twin three-year-old boys. This article was adapted from an original post on her blog, www.lovingyoubig.com, where she celebrates the power of sharing stories and invites people to empathize with one another.