This coming summer my organization,Kidventure, will initiate a summer camp pilot program called Voyager that provides a mainstreamed camp for kids with special needs. It is the result of our desire as an organization to bring the joy of Kidventure and camp to a wider group of kids while providing an appropriate camp setting for each child’s specific needs.
But there is much more to this decision than just that.
I have a little buddy in my neighborhood. His name is Ryan…
Earlier in life Ryan was diagnosed with Fragile X Syndrome. Fragile X Syndrome is a genetic condition involving changes in part of the X chromosome. It is the most common form of inherited intellectual disability in boys. Behavior problems associated with Fragile X Syndrome include delay in crawling, walking, or twisting, hyperactive or impulsive behavior, intellectual disability and speech and language delay. This is what most medical books will tell you. What almost all of these descriptions fail to illustrate is what children like Ryan do offer and provide for not only themselves, but for all those around them.
The following is my attempt at redefining Ryan in terms of who he is as a ‘regular kid’ and not one solely articulated by a special needs label:
Boy, 10 years old. Full of energy and a wild, wonderful spirit. He has an incredible affinity and love for all things musical. He is an amazing dancer, who will listen to rock-n-roll for hours on end and move his body in a crowded room like no one is watching. He loves to play and will initiate a game of football, tag or whatever for the sole joy of sharing time with others. He is loving and will impart a hug on just about anyone with the capacity to hug back. He is mischievous at times and possesses this smirk on his face like something is fixing to seriously go down and striking eyes that tell you that he knows just what’s up, even when you don’t. He’s smart, stubborn like me and one of the most likable kids I’ve ever known.
As humans (particularly the grown kind), we tend to categorize and box things and people into nice, neat compartments. We utilize formal descriptions, preconceived notions and bias as tools with which to do so. This is what I believe has happened with the special needs community in great part. The rise in diagnosis and subsequent labeling of kids with special needs over the past few years has resulted in a collective consciousness that automatically places kids in these boxes and unfairly compartmentalizes them culturally. But more times than not, if we look beyond the label and diagnosis, we find unique individuals who have more to offer us than we ever imagined. And isn’t that how we all wish to be defined?
As a child, I too spent a fair share of time in hospitals being explained by a litany of medical terms. While the descriptions and diagnosis certainly aided in caring for me then, they did not define me (nor would I have allowed them too). Likewise, we as a society must not allow people with special needs to be judged similarly and must recognize the amazing gifts they present us all.
Ralph Waldo Emerson once said, “What lies behind us & what lies before us are tiny matters compared to what lies within us.” Through special needs kids like Ryan, I have gained a broader understanding for bravery, a greater capacity for compassion, and discovered new ways in which to view the world around me. Without a doubt, my life has been enriched.
So rock on Ryan, rock on!