Friday, February 4, 2011

'I'm part of a whole new world'























I heard Chris speak at a workshop here at Holland Bloorview. So I was thrilled when he agreed to write a piece for BLOOM. I’m happy to say that since this story was published, Chris has achieved his dream of moving into the non-profit sector and works with a literacy organization. Thank you Chris! Louise

‘I’m part of a whole new world’
By Chris Beesley

My son's name is Mitchell. He's nearly 16 years old. Most 16-year-old boys are eagerly anticipating getting their driver's license and dating girls. Perhaps some are considering going to college or university. Mitchell isn't doing any of those things. And while there are tears in my eyes as these facts stare at me in black and white, I don't feel sorry for him. They're just selfish tears; the result of indulging in momentary thoughts of what might have been.

Before we had children, my wife Lori and I were like many young couples. We were building our careers and chasing dollars. The thought of buying a house and having children was on the horizon, but friends, dinners out and planning our next trip were immediate concerns. Once we found out we were going to have a baby, there was a seismic shift in our priorities. Suddenly, a house in the suburbs and saving money became paramount. So far, life was going according to plan.

Then Mitchell was born with a cleft lip. Nothing severe though. A couple of surgeries at Sick Kids and all was well: just a little ‘speed bump.’ But all was not well and by the time he was two, Mitchell was diagnosed with Fragile X, the most common inherited form of intellectual disability. This wasn't just another speed bump. This was a giant ‘off ramp’ from the road we thought we were on.

Our lives became a series of waiting rooms, tests and therapies. Our initial focus was Fragile X. How could we gain control over it? What type of therapies and interventions were available? We lived in fear of not doing enough, of not doing it fast enough, or of not doing the right thing.

Through all of this, Mitchell was the same cute little toddler he'd been before we got the diagnosis. A wise genetic counselor reminded us of this. Mitchell needed to be valued as a person, she said, not a diagnosis. She recommended we take plenty of time to just be a family. She told us that 80 to 90 per cent of couples with special-needs kids end up divorcing. She gave us permission to say: “Okay, we’re overloaded. We’re not going to go to speech therapy for three months. Nothing bad will happen and we can reconnect as a family.”

In the end, I’ve learned that it’s the family and friends in Mitchell's life who will determine who he is. It's not about what syndrome he has or how much therapy he receives. Mitchell taught me that. And he reminds me of it every day just by being the funny, outgoing, empathetic (and yes, frustrating and exasperating) teenager that he is.

Some people say that God doesn't give you anything that you can't handle. Some say we're lucky that God chose us to be parents of a special child. Others say: ‘Everything happens for a reason.’ These are all comments from well-meaning family, friends and acquaintances. They rarely come, however, from other parents of special-needs children. When we asked ourselves “Why us?” and “Why did this happen to our child?” Lori was very pragmatic and said “Why not us?” and “Why not our child?” I believe that Mitchell came into our lives simply because my wife and I wanted to have children. You can't choose your child's gifts and abilities. I think good parents of typical kids eventually get to that perspective. But having a special-needs child makes you realize it faster.

My focus in life has changed because of Mitchell. I no longer spend all my time on career. I volunteer about 20 hours a month with the Community Living Toronto board and as chair of the Developmental Services Council of Toronto. I also volunteer teach Track3 skiing to kids with disabilities in the winter.

I’m part of a whole new world that’s really cool and that I never would have been exposed to without Mitchell. I enjoy it so much that I’ve taken non-profit management courses and am actively trying to switch careers. I’m interested in how I can make a difference in others’ lives.

So we’re a family on a road that's less travelled but one that's got some unique – even breathtaking – scenery and I'm glad we're on it.

Chris Beesley (with Mitchell in photo) and his wife Lori were part of a group of parents and professionals who founded the Fragile X Research Foundation of Canada.There are lots of great resources on their website.

Reactions:

6 comments:

Chris your such a wonderful Dad! Love it.

Great story! Love reading about another Fragile X Kid. ;-)

Thanks for sharing your story. I am the mother of 3 kids with fragile x. It's funny, I don't like when people call me an "angel." No, I love my kids and will move mountains for them --diagnosis or not. I only hope I'm being as good of a mother as they deserve. Thanks for your story.

A beautifully written story of your take on the journey. It sounds exactly like the scenarios we went through. Our son is 17 now and I do feel very blessed to have had him. His Fragile X diagnosis has made ME a better person with a greater appreciation for everything in this "whole new world" in which we live. Thank you for sharing. Your words were a good reminder of the joy my son shares with me everyday.

"You can't choose your child's gifts and abilities. I think good parents of typical kids eventually get to that perspective. But having a special-needs child makes you realize it faster." So true. Thanks for sharing your journey.

I agree with Fay being a parent of a girl with extra needs taught a LOT more than I have learned in my 36 years.

(P.S Fay, I hate the special needs child, it doesnt do our children justice).