"It was all a waste of time!" I said to myself in desperation. "Christina is isolating herself from the other girls, we waited all year for Camp, only to have her sideline herself, becoming obsessed with nachos when she could be making new friends!"I thought wistfully of Camp the previous year, when she and a group of girls left the bowling lane to work on a dance number in hat evening's talent show. I was so proud of my 13 year old daughter, to be relating to her peers like a normal teen. I took photos of her intently focusing as she learned the steps. Later at the talent show, Chrissy would suffer from stage fright and refuse to dance, but the fact that she had interacted so meaningfully with her peers was so significant, I didn't mind.
Christina is no ordinary teenager. Born with Down syndrome, she was learning to speak slowly but surely in preschool and all her teachers had hope she'd be able to communicate. She was happy and popular in Kindergarten, making friends with her few words and every time I walked through the hall of her school, people I didn't know called her name and waved. We had great hopes for her future.
It had all come to a crashing halt when we discovered an anomaly in her spine. We had to restrict her risk taking on the playground; no more "follow-the-leader" up and down the play scape. We might as well have put a gag over her mouth. Christina was devastated that her principal means of feeling included was no longer available. She began to act out in strange new ways, and her speech virtually disappeared. She was removed from the inclusive classroom and put into an autism program, where she was miserable, and soon she resisted going to school. I spent two years forcing her to go to school, a feat which often took nearly the entire day, when I finally decided to withdraw her in fifth grade to home educate her. The stress of being in a bad school placement had taken its toll, she suffered from psoriasis which further deteriorated into psoriatic arthritis. Eventually she was diagnosed with autism in addition to Down syndrome.
At home she was able to receive intense therapy for sensory integration disorder which explained her strange, sensory seeking behaviors; lining up lego blocks, throwing her bottle of water, suddenly screaming at the top of her lungs at children to gain attention. We had a behaviorist help us develop a plan to minimize negative behaviors and help her accomplish successful events in the community such as a shopping trip. We took her for physical therapy to help her overcome her limitations due to arthritis and help ease the fight-or-flight reaction her body endured from her negative experiences. We tested her for food allergies and changed her diet accordingly. We were happy with this progress but she was still not able to relate to her peers, always alienating them by her odd behavior and lack of language. We tried over and over to integrate her into various groups with no success.
It broke my heart.
So the annual Christmas party at Camp Care, held at her physical therapy office, stood out in our minds as the one chance for Christina to make friends. Two moms with daughters with Down syndrome, Chrissy's age, greeted me at the bowling alley but, despite our efforts, our daughters didn't communicate this year. Chrissy kept leaving the group to play alone, and I was very discouraged.
Later that evening, in the church basement, during the dinner to be followed by the talent show, Chrissy ran into the corner, overwhelmed by the strange place, refusing to interact with anyone. My husband had to take her out to her aunt's for awhile to calm her down. When she returned, she refused to eat, overturning her plate on the floor. In response to the stress my back went into spasms, and during the talent show, I was in so much pain I could barely turn to watch the show.
The day had been an emotional roller coaster, my friend observed. I fought back tears.
Then, the Director's wife invited people who wanted to "offer their talents as a gift to others" to come and perform in the talent show. Chrissy's therapist tried to coax her to join a dance performance to no avail. "This year, Camp is going to be a total failure," I thought miserably.
The last performance was a virtuoso performance of "O Holy Night"by a gifted pianist. As the lights were dimmed and the Christmas lights twinkled, emphasizing the beauty of the Christmas carol. Suddenly, as if on cue, Christina stood and walked confidently to the stage. She began to dance. lifting her arms like a ballerina, twirling slowly while quietly singing to the music with an expression of tranquil joy. She was completely absorbed as she danced, offering her gift of self-expression to the audience.
No more the lonely girl in the corner or the awkward teen who dumped her plate of food, Christina was the Christmas Angel, captivating her audience with poise and filling the auditorium with peace. Her father stood at her side, transfixed, and I felt tears of joy rolling down my cheeks.When she first reached the stage, I had wondered if we should stop her from stealing the pianist's moment, but soon I realized that her performance was also a gift to the audience.
When she was done, she returned to her seat and the pianist, who is a music therapist. continued her dramatic rendition of "O Holy Night." This was perhaps the most dramatic accomplishment of her career, transforming an agitated young woman to a graceful ballerina who lit up the night with her inner radiance.
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