Parenting

Autism, music and a mother's dream

Brenda Kosky Deskin, the founder and editor of Autism Beacon, shares how music brought her closer to her teenage son.

Photo: bluebird13/iStockphoto

Music has always been an important part of my life. I have such fond memories of the summers I spent at Interlochen Summer Arts Camp in Michigan as a teenager back in the early ’80s. Like most Interlochen Alumni, hearing Franz Liszt’s “Les Préludes” brings me back to those wonderful summer days filled with friends, fun and music, as this is the piece that is traditionally played by the camp’s orchestras to mark the close of every season.

But, as we know all too well, time has its way of marching on and my Interlochen days became more and more of a distant memory. However, I always had a little hope tucked away in the back of my mind that one day, I would be able to provide my child with the “Interlochen experience” and that “Les Préludes” could be something special that the two of us could share.

My son, Michael, just turned 18 last week and indeed music has continued to play an important role in his life. You see, Michael has autism. When speech evaded him as a toddler, we used music to teach him how to communicate. In fact, his very first words were sung. Even now, when he is frustrated we turn to music to calm him. His vast and eclectic music collection is one of his greatest treasures.

My dreams for Michael are now very different than those of other parents, or than those that I too embraced as a young mother, pre-diagnosis. While of course my ultimate wish is for Michael’s autism to completely vanish, I wouldn’t consider this to be a dream, but rather, a wild fantasy that can never come true. The pragmatist in me has set the bar lower in life, even for my dreams.

So what are these new dreams that I have for my child? That he finds happiness and fulfillment in his life, despite his significant communication and cognitive deficits; that his self-injurious behavior finally stops; that he is cared for and loved when my husband and I are no longer alive.

In my ongoing quest to bring meaning, purpose and enrichment to Michael’s life, I contacted our local orchestra a few weeks ago to explore the possibility of Michael observing one of their rehearsals with the intention being that we would gradually work our way up to him attending an actual concert. To my delight, the powers that be were were more than obliging. They welcomed Michael and me with open arms.

When we arrived at the theatre doors as the musicians were tuning their instruments, Michael was visibly anxious. With a bit of encouragement, however, he took his seat and settled in. Since he was apprehensive about this new place and experience I set his timer for 20 minutes so he would know exactly how long he could expect to be there. The conductor walked on stage and the music began. I could see Michael’s stress level gradually decrease as the music played on. He even experimented by lifting his noise-cancelling headphone from his ears every now and then to get an appreciation of the music at its full intensity.

As his anxiety left him, so did mine leave me and I too began to enjoy the music. So you can imagine how pleased I was that when his timer finished its countdown, Michael did not want to leave. “One more piece and then we’ll leave on a high note,” I thought, giggling to myself at the silly pun I had made.

The conductor moved on to another piece which, after only a few notes, was immediately familiar to me. I couldn’t believe it… “Les Préludes”! It took everything in me to not burst out into tears as I became overcome by the emotion of the moment. I regained my composure as the music played on, reflecting back on my life, my dreams and the ironic twists and turns that have in many ways made some of those dreams actually come true. Michael and I actually did end up sharing “Les Préludes” together, albeit in a very different but far more powerful way than I could have ever possibly imagined.

Brenda Kosky Deskin in the founder and editor of AutismBeacon.com, a website and online directory that raises awareness about autism and provides help and hope to autistic individuals and to those who love, teach and care for them.