by Shannon Wray (Love, Hope & Autism, March 18, 9pm, CBC Docs POV)
When my son, Fraser, was three years old, a dark, mysterious stranger called autism stole the daydream map of his life I’d had in my heart and mind. I felt lost and devastated. Who would he be? What would our life be like? I no longer had the compass of my certainties to guide me or, in many respects, the comfort of my longtime relationships for support.
I was 37 years old and supposedly infertile when I’d discovered unexpectedly that I was having twins. Most of my longtime friends weren’t raising families and motherhood, alone, was somewhat isolating, much less having a child whose behaviors made it difficult to spend time with adults. However, over time, other inspiring and encouraging women filtered into my life. Some were older mothers like myself, and some were from what I came to think of as an extraordinary secret society of Autism Mothers.
Without question, being the mother of an autistic child is very serious business and hard work. We are called to be strident advocates for our children and strategists at every turn. We must fight for what our children need from governments, therapists, schools, and society all the while struggling with feelings of being invisible in the greater population. It’s exhausting, frustrating, heartbreaking, and challenging. That’s the public face of it. But there’s another, private part of being an autism parent that we generally only share with each other and that’s how crazy, wise, beautiful, and hilariously funny life with an autistic child can be. When my little group of fellow autism mums and I could carve out precious evenings to spend time together, we would put wine and snacks on the table and tell our favorite funny and bizarre stories. Sometimes we would howl with laughter, but other times we would hold each other when the poignancy and heartbreak of our children’s lives broke our hearts, yet again.
After I’d recovered from the initial shock of Fraser’s diagnosis, grieved the loss of “normal,” and educated myself about autism, I no longer saw Fraser as someone with a disorder, but instead as someone whose personhood just included autism and its unique characteristics. That changed everything as time went on. I began to see that he had astonishing and beautiful lessons to teach me. As an example, Fraser is, in some curious way, like the absolute opposite of a deaf child. He hears too much. Every sound, no matter how insignificant, roars at him. He is terrified of dogs, and he can hear the sharp sound of barking blocks away. Most of us can sit in a restaurant and focus completely on the conversation we are having with someone across the table, the sounds of silverware, and chatter, and music, and the kitchen retreat somewhere into the background of our attention. But for Fraser, who hears the specifics of everything and imprints them, it is auditory assault. That’s made me think a great deal about the dynamics of hearing. How much do we hear but choose not to listen to? In that tuning out that we do naturally; the editing of our auditory world on a daily basis, do we simply fail to record what we don’t perceive? Or are there great storerooms somewhere in our brains that keep records of sound? If we could all hear like Fraser, could we retrieve and embrace the very first sounds we ever heard at birth or the first time we heard the words, “I love you?” Faced with every sound we’ve ever heard, which would we choose to discard forever, and which would we keep? Living with a person who hears every word I speak amplified to a terrifying degree makes me keenly aware of what I say and how I express it. What an extraordinary gift that is from my son. It’s one of many.
The unpredictability of life with autism forced my family and me to throw away our maps of expectation. It liberated us to live in the possibilities that come with uncertainty and to navigate with only one guiding principle, unconditional love.
Watch Love, Hope & Autism on Sunday, March 18, 2018 at 9pm (9:30 NT) on CBC Docs POV.
Shannon Wray is a writer and television producer with credits in both Canada and the U.S. Raised in a Hollywood show business family, her aunt is Fay Wray, Canadian actress, and star of the classic film King Kong. Ms. Wray has enjoyed careers in music, book and magazine publishing, television and film. Currently, her family is the subject of the upcoming CBC POV documentary film, Love, Hope & Autism airing on March 18, 2018, and she is at work on a companion book to the film entitled A Different World. Shannon lives in a small mountain village in Southern California with the love of her life and her son, who has autism. Her daughter is graduating from film school this Spring.