Have you seen a disruptive child lately? Was he poorly disciplined, or autistic? Do you know the difference? Imagine being blessed with the birth of a healthy baby boy, feeling confident that we did everything “right” that lead to that moment. Now fast forward to years later, when that same healthy, perfect baby boy is diagnosed with Asperger’s Syndrome, a form of high-functioning autism, characterized by social isolation and eccentric behavior. Knowing there are no cures for autism and facing the reality of the statistics that he would be a victim of bullying throughout his entire life.
From the first few weeks of Elliott’s life, we knew he was facing challenges that didn’t seem “normal.” As a baby, friends and even doctors described him as “collicky” but as his mom I sensed it was more. As he grew older, his fascination with ceiling fans and spinning tires alarmed us but with all of his other developmental milestones being met or exceeded we brushed off these important signs, praying it was “just a stage.” When he was able to spin multiple plates on the floor at once like a magician and recite his alphabet at the tender age of 18 months we truly wanted to believe he was gifted. Still the sensory challenges remained. Elliott’s auditory sensitivity was undeniable. He became over-stimulated and overwhelmed in various environments more often than not. As the person who sings the national anthem for the Red Deer Rebels I became sad and confused watching the mom’s with babies that would sleep through the hockey games. At the age of five these games are still “too much” for Elliott.
After many months and tireless hours reading books like “Raising the Spirited Child” and “Raising A Sensory Smart Child” I knew there was more to understand about our little boy. Luckily, at the back of one of the many books we had read was the most valuable piece of information we could discover – the contact information for Aspire Special Needs Resource Centre in Red Deer. I was reluctant to walk into the center that day. While deep down I knew what the signs, the symptoms were telling me, to actually speak the words out loud to someone seemed like admitting the worst. Putting my fears aside, I continued to walk in and talk about the struggles my 2 year old son faced and that is the moment our lives changed. Through the early intervention program we were blessed with our first angel, Sarah. She visited our home as often as we liked, offering more books, advice, strategies to help Elliott with his struggles. While she could not offer an official diagnosis, we felt we were on the right path. Soon, we were enrolled in the TAC program. Along with 5 other boys and their caregivers, Elliott and I attended a 5 week intensive program run by a psychologist, occupational therapist, behavioral therapist, speech therapist, and the special needs teacher. He was so different than the others. He had the vocabulary of a wise old man while the other children could barely speak. It gave us hope, but yet, we still saw him struggle. Deep down, I knew, we both did, that Elliott had high functioning autism. But on the day we were pulled into the office with our caseworker where she actually spoke the words, I broke down. My husband was sensible – he was glad. This meant Elliott would get help in school, that we were validated that this wasn’t just bad behavior. But all I could think about was that this was an incurable, life long sentence for him. He would have to “cope” throughout his life dealing with his sensory struggles, work to get other’s to understand him and when they didn’t, the chances that he would be labeled an outcast would be great.
Since being diagnosed with Asperger’s Syndrome in May of 2012 at the age of 4, Elliott continues to face challenges every day. This year he started pre-kindergarten. Our hearts burst with pride each day we witness him overcoming sensory struggles and coping with the many anxieties he faces. But then I am sad that for the 2 hours that he is at school, he is not really enjoying himself as much as he is coping. When I talk to friends they try to reassure me with their parental experiences but in my head I think “they have no idea.” So I smile and nod my head, readying myself for the next event I have to prepare him for. Haircuts, a change in our routine, a buzzing fly up in the skylight on our roof that sends him running to his room with hands over ears. I get to explain why the kids would sing happy birthday so loudly at the party and why I invite friends over with babies that cry so loud. We celebrate the little things “normal” parents would think is ridiculous – trying a new food, not throwing a toy when it doesn’t do exactly what he has planned, feeding himself, coping in an over-stimulating environment, telling us when things are “too much” and he needs a sensory break.
While we have been able to teach family members and friends about our unique little boy, I still can not ignore the sideways glances or comments I get when we are out and he is dealing with a struggle. Only I know the triggers that will set him off and the ways to calm him down. While he loves going out for ice cream, the risk that someone may order a milkshake that requires the use of a noisy blender is a risk he won’t take. He is a great helper at the grocery store most days but on a day when he is “off” the buzzing of the overhead lights or the angry face on a magazine in the checkout line may be his breaking point. The look on his face when these triggers put him into fight or flight mode is heartbreaking. And seeing the looks on people’s faces then I get angry. I want to yell “he’s not a bad kid, he has Asperger’s!” But I don’t. Because Asperger’s doesn’t define Elliott.
The way he hops around with endless energy, impressing us with his outstanding vocabulary and never-ending questions is what defines him. The way he can scrunch up his face to make us smile, or blurt out something so out of the ordinary we all burst into giggles. We are overjoyed that he loves to be hugged and cuddled. He is such a kind, caring and sensitive little soul. He has taught us so many valuable life-long lessons seeing our world through his little eyes. Our family is forever changed by him. Love, patience, and kindness are our priorities, and each day we get to see what his world is like, we understand his struggles a little more. Imagine that – a world full of joy, laughter and love because of this one little boy with Asperger’s Syndrome. He has achieved and overcome more in his five years than many in their lifetime. The possibilities are endless for Elliott. One day he hopes to become a paleontologist and I have no doubt in my mind he can make that happen. So we will continue to always advocate for our courageous little boy in every situation. And while our journey will continue to have it’s ups and downs, we wouldn’t change a single thing. We are blessed. Imagine that.