‘Part of a School Orchestra’ by Nancy M. Schwartz

‘Part of a School Orchestra’ by Nancy M. Schwartz

Alex was born with Trisomy 21 the medical term for Down syndrome. Often I am fighting for his right to use the bathroom, get help being fed, and move out of his wheelchair to practice standing and walking.  Alex does not walk or talk yet. Alex is amazing. He swims with joy, and loves to learn and be a part of a classroom.

If we are in the pool together sometimes other children will ask about him, and sometimes they ignore him. If we are in the community it is the same. I think sometimes people are uncomfortable with differences. I have written two books about Alex. Up Not Down Syndrome Uplifting Lessons From Raising A Son With Trisomy 21, and Up Bow Down Bow A Child With Down Syndrome And His Journey To Master The Cello. The first book is about the lessons Alex has taught me. The second book is about Alex studying the cello.

Alex has been taking cello lessons for the last four years with April E. Beard,  my coauthor for Up Bow Down Bow. I love to play duets with him on our cellos, and to witness his love for music while learning about a beautiful instrument. Each lesson amazes me, and the way that Alex responds keeps me astonished. Alex is always teaching me how much more he can do, and be. Alex is a young man,  musician, a reader, a writer, a listener, a speaker,  a cellist, a son, a brother, a  student, a friend,  a grandson, a nephew, a gift and blessing.

My sister, Susie Garber, is a writer. Recently, her eighth book was published. She writes for a newspaper in New York, and writes articles for educators. One article was SO powerful I shared it at my middle school with my middle school students. Music Notes, was the title. In Susie’s article a young man with challenges is given a chance to perform with the school orchestra. While some of the other students are annoyed by his inclusion it ends up helping them win the kindness award. It gave me an idea.

I asked April if Alex could be included in a performance with the school orchestra. “Sure,” was her immediate response. Alex has epilepsy and occasionally has night seizures. Because of this, we try to avoid his seizure triggers. Staying up late and getting overtired, sickness with a fever or congestion, we keep him regularly going to the facility as constipation can be disastrous for seizures, meals with balance and movement with exercise keep him from getting too many seizures. The performance would be in May and would start at 7:00 pm.

7:00 pm is usually the time Alex’s hypotonia and his challenges make him sleepy. I worried. Would he be able to stay awake? Would he have a seizure from being up later? Would I be able to get his wheelchair on the stage in front of an audience? Would the other orchestra students be annoyed he was in their performance like the students in my sister’s article?

We practiced during each lesson. I helped Alex with his bowing and the rhythm of his song, Shoe Symphony. Hours we spent, learning and reviewing it. The night was finally here. Alex’s brothers, Josh and Sam were home from college, at the University of Virginia. They would be in the audience. I dressed Alex in his finest and put his cello in the car. His helper was not available that evening. Josh volunteered to help on stage.  Sam volunteered to video the entire song. It takes two people to help Alex play. One to help him bow, and one to help him hold and hug the cello.

We found a spot near the pianist. April would be conducting, I glanced at the darkened and  hushed auditorium full of parents, and loved ones waiting to hear the school orchestra. I hoped the bright lights would not spark a photo-sensitive seizure. As we lined the wheelchair up next to the piano, we would not be near the other cellos, no room.  I held my breath. I am not sure why I was nervous. Here was a moment I had dreamed about. Our Alex showing off what he CAN do, how he CAN be a part of something.

April raised her arms to signal we started. I froze and recalled how she said to airbow if we get lost. I did just that. Feeling the failure not just mine but the failure of letting Alex down. Josh stifled a laugh remembering the many hours we had put into practicing this moment so the song Shoe Symphony came out just right. Later I would confide my air-bowing part of the song to April and she explained many of her orchestra students freeze, and often use this strategy. She smiled and said there was another performance opportunity next year.

I was and am SO proud of Alex for rallying and performing with the orchestra. A part of it. Not separate nor different just included like any other eighth grader I can’t wait for next year’s orchestra performance and I am SO happy Alex got to be in this one even, if I messed up the bowing. The bowing was not as important as Alex being included like any student