Why We Walk: Autism Speaks Banner Flies Atop Mt. Rainier

Wednesday, September 24, 2008 View Comments

This post is by John Carinha, co-chair of the inaugural British Columbia Walk/Run Now for Autism.

As a co-chair for the British Columbia Walk/Run Now for Autism on October 19, 2008 in Burnaby, BC, I have become highly motivated to take part in this inaugural event. My son Brandon was diagnosed last August with autism. After meeting the people at Autism Speaks Canada and attending the Autism Speaks Leadership Conference in March, I was moved to make this event make a difference in people's lives. I'm not walking for the purpose of health and physical betterment, albeit notable reasons. Rather, I am walking with the hopes that if even one person comes away from the event more knowledgeable about autism, then I have done my job. If a family leaves the facility with smiles on their faces and those of their children, then for me, the event was successful. The challenge for me is not in the walk itself, but rather, in making the event matter, making the event a welcoming place for those new to the disorder and new to the autism community.

Until I had children, I had a sense of invincibility about myself. There was nothing that I could not conquer, no challenge in which I would not succeed. Life was more about numbers and checking off one's achievements than it was about just living it. I was known to some at the time to be ‘full on' as in, always on the go, never pausing for anything.

Children, namely my second child, Brandon, humbled me. When he was diagnosed with autism last year accepting it was difficult; herein lay one challenge whose rules were not set and that no amount of training was going to prepare me for. As we moved through the paces of ABA and establishing networks of therapists, SLP's etc., Brandon unknowingly was not only being taught new things, but he was teaching those around him.

At the time, autism had a certain permanency for me. It was directionless with no known cure and children were deemed ‘autistic', a term to this day I avoid. When I discuss the disorder I will always say ‘He has or was diagnosed with autism,' a phrase which lends itself to hope. It is not a finite statement and I refuse to let myself believe that autism is a finite disorder.

At the early stages, I had two choices to make, let the disorder control my son and my family, or choose to control the disorder myself and help my son to do the same. Each and every day my son wakes to new challenges. But each day he wakes with a smile on his face. I can tell you wholeheartedly, Brandon has taught me to not necessarily slow down, but to enjoy today and not worry so much about tomorrow.

I remain active today for different reasons than I did several years ago. Today I look to challenge myself in various ways both physically, mentally and socially. It's not that I look to mimic autism and what it does to my son, but rather, I look to my challenges as a means to make myself stronger. Time is no longer a variable that matters. Posting a personal best is irrelevant. What does matter is that I finish what I start, that I persevere in all that I do and that I do it with a hunger and attitude that leaves positive foot steps for my children to follow.

Climbing Mt. Rainier was a monumental challenge which had more emotional moments than physical. At Camp Muir, sitting at 10,000 ft, I walked out of our bunkhouse and heard a father speaking on a cell phone to his kids back home. I sat on a rock outcropping and cried. I yearned to talk to my kids. I wanted to hear their innocence and excitement to get that one last shot of verbal encouragement so that I could continue with our summit push early the next morning. I had cold feet for a good while and gave serious consideration to abandoning the climb due to the risks and also the liabilities I had with my family waiting anxiously at home for my safe return.

As I sat and mulled over my options, I thought, Brandon doesn't have options! Autism does not afford our children the opportunity to decide if they should face the challenges inherent to the disorder on any given day. They are forced to face the music each and every moment of their lives, and with that, my decision was made easy. With Brandon in my thoughts, I was able to reach the summit at 14,411ft at 6:20 am on July 8, 2008.

Every morning before I leave for work I walk into my son's room. Sometimes I'll sit and watch him sleep, other times I'll kiss him goodbye and go on my way. But with each and every passing day I silently root that today he will curb the autism just a little bit more; that today, he will kick sand in the face of autism.

There hasn't been a day where he has let me down.