CEO Blog: Guest blogger Laura shares the importance of seeing all of her son, Wesley, and not just his special needs

img_4914My son Wesley is a five-year-old boy who loves sports, telling jokes and playing with his classmates. He wants to drive a bus when he grows up, he’d like new red shoes to match his glasses and dreams of having his very own ball pit, in our living room. Wesley is much like any other kindergarten student – bold, bright and sometimes unexpected – but you have to look past stereotypes to really see what he can do.

You see, Wesley has a lot of experience with the services at Holland Bloorview Kids Rehabilitation Hospital. He first came to the hospital as a toddler, after intensive cancer therapy for a brain tumour. During his treatments he suffered a devastating stroke and when we first arrived, he was unable to move his left side. He couldn’t swallow, hold his head up, or even cry.

At a glance, the boy you see now wears hearing aids, glasses, and splints on both legs and an arm. His left side is weak and he loses his balance easily. Wesley speaks only a few sounds and needs a walker or wheelchair to move about. “That poor little boy,” people sometimes say at first. But if you knew him, you wouldn’t be heard uttering that phrase. Accomplished, witty, charming and active are some of the words that best describe Wesley.

I like to believe that people are inherently good. I know some parents and special needs kids have had to deal with outright negativity and ignorance and that makes me sad. Thankfully, for us, it seems to be that people are just a bit unsure around a child who looks different or whose life they don’t understand. I try to give everyone the benefit of the doubt and Wesley is usually capable of proving me right. People want to get to know him and interact with him, they just don’t know how to, at first.

My favourite qualities in my son are his sense of pride and independence and his sense of humour. You might think a child who can’t really talk and needs so many assistive devices to get around couldn’t be funny or strongly independent, but kids like Wesley are rarely what the stereotypes might have you believe.

With signs and pictures, Wesley has been telling jokes since before he could make any sounds. He loves puns and rhyming words. He’ll say “Frogs eat fries!”, instead of “flies” and has talked about our trip to “Ha-why?-e” . He says he will go to a friend’s “birthday potty”, then breaks down in fits of giggles when we finally figure out the joke.

He’s very bright and will try patiently, and creatively, to make himself understood.  The first time this happened he was very young and didn’t have a way to say “other” or “chocolate”.  I was blown away when I realized that “I no want drink this milk. I want…cake milk” was his way of telling me he’d prefer chocolate milk!

His teachers and therapists can tell you he is fiercely independent. It probably isn’t the first thing you’d think when you see a child being lifted from his car seat into a wheelchair, or wheeled onto a pool deck and lowered into the water. Wesley will accept only the smallest amount of help necessary and if there is a way he can figure out to do something on his own, he will. He refuses to pedal his bike until we let go of the handlebars and we had to install a baby gate to stop him from sneaking to climb the stairs on his own.

Wesley was determined to participate in a triathlon after watching his cousins from the sidelines. You can tell he loves the independence of moving in the water and on his bike. This past summer, with a lifejacket, an adapted tricycle, his walker and his father carrying him between transitions, he completed his first triathlon! People from Holland Bloorview, family and friends, even strangers and race organizers, followed Wesley along the course to cheer him on. I will never forget how proud he looked – beaming – as he crossed the finish line to receive his medal. More than a few adults stopped us that day to say what an inspiration Wesley was to them. My heart was so full.

I think the way we communicate with Wesley happens to help when he’s meeting new people. He will sign and make attempts at saying words, and we repeat each word as he is going. Hearing the words repeated seems to help his speech flow, and it helps us both to confirm that we are understanding what he’s trying to say.

When we are out and about, at a restaurant or in a checkout line, people will overhear us talking with Wesley. I don’t feel like they are staring, but I do get the sense that they are intrigued by what is going on. Wesley has the usual 5-year old conversations that any kid has with their parents.

Wesley: “I want to eat French fries for lunch.”
Me: “Wesley, you can’t have French fries every day. We are going to eat lunch at home today.”
Wesley: “Oh…..ok…But TOMORROW, I want to eat French fries for lunch.”

I can see people inevitably smile at Wesley when I look up and catch their eye.  I smile back, both because I am a mom who is proud of her son and because I know that Wesley has just created a small bond with a new person. I can see people are surprised that he is able to communicate with us and even more surprised to discover that this kid, who looks and sounds different, is talking about the same things that any other kindergartener has on their mind. I can tell when the switch clicks on and people realize there is a bright and funny young mind trapped behind Wesley’s garbled baby-talk and awkward signs.

After spending a little time getting to know him, Wesley’s personality and abilities shine through and there’s no way anyone would think of him as a “poor little boy” anymore.  Once people catch a sparkle of what lies underneath, they stop seeing him as just a product of his limitations and adaptive equipment. They begin to see the impressive kid he really is…the kid who loves to tell jokes and race triathlons.

All mothers and fathers think their children are pretty amazing, and special needs parents are no different. We love our kids and are proud of who they are and their accomplishments. Like all parents, we help our kids deal with challenges they face, we enjoy their personalities and celebrate their strengths.

Wesley manages to win over complete strangers before we’ve paid for our groceries, but for every Wesley out there, there are kids with different challenges who may not be able to make those connections as quickly. They may not be able to flash a cheeky grin. They may not be able to make eye contact or control their hands to give a high-five and wave hello. Some kids look even more different than Wesley does…but I guarantee you, there is a whole amazing and unique little person inside every disabled kid you see…just ask them!

You can learn more and help support essential programs for Wesley and other kids like him, such as respite care, family support, music therapy and camp.

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