Different, But Not Less

EVERY SUMMER OUR FAMILY VOLUNTEERS AT AN ONTARIO CAMP that assists kids with autism. A friend, Fran Slee, inherited a former family camp on the shores of Lake Cecebe and had a dream of turning into a camp where not only autistic kids, but their families, could have a place to move out into Nature in security and awe. It is a wonderful place of personal and collective transformation.Our family has never been challenged with the pressures of autism, but we’re not blind to the obstacles and opportunities it brings to the lives of these families. Many kids with autism face sensory challenges, reacting strongly to bright light or crowd noise. Some respond so violently that they can slam their heads against walls. Others can quietly stroke a companion’s hair and hum to themselves. The fortunate ones develop coping mechanisms over time and learn to tolerate what before threw them over the edge.There is a spectrum to autism, with people classified within a low-medium-high range. The high functioning can move on with their lives, especially with early training. It is presumed, though not capable of being proved, that famous people like Albert Einstein, Thomas Jefferson, Charles Darwin, and even Michelangelo, struggled with autism. But those are the people everybody likes to talk about because their creative minds discovered remarkable ways of seeing their respective worlds. But what of all the others – remarkable people with autism attempting to move ahead with little steps everyday, or those who might be forever lost in their challenges? They will exhibit public behaviours that embarrass others but are fully understandable to parents.Those fortunate enough to spend a little time with them witness strains of remarkable brilliance breaking through those habits they require to function. Though they have trouble really knowing the world and how to express themselves within it, they are nevertheless capable, over time, of understanding it and revealing moments of profound inner beauty when such occasions occur. Those lucky enough to find an inner path to walk upon become remarkably functional; others must always be guided by a companion’s hand. Temple Grandin says that the autistic person is, “different but not less.” No matter where they lie on the spectrum, they are just like me, struggling to find a sense of order and place in the world. They have their weaknesses and strengths, but are capable of great love and self-awareness.The ability for parents to be able to bring their kids with autism to an affordable camp, swim with them in the water, cook outside, head out in a canoe, or watch turtle eggs protected in a nest on the beach, brings moments of delight, illumination, and peace. Jane and I went out this week and bought a bunch of fireworks and set them off from the beach on Canada Day evening for those present. The “oohs” and “ahs” were worth every moment. For a time we were all just humans on a journey, capable of awe, and enjoying community.I watch the remarkable ability of the parents and caregivers and I’m forced to wonder if I’ll ever develop such capacity for patience and understanding? Likely not, for they are forces of nature, with wells of feeling so deep that they are as remarkable as their own kids. I think of what one of their number, Debra Ginsberg, said and feel I am only capable of standing in their shadow:

“Through the blur, I wondered if I was alone or if other parents felt the same way I did - that everything involving our children was painful in some way. The emotions, whether they were joy, sorrow, love or pride, were so deep and sharp that in the end they left you raw, exposed and yes, in pain. The human heart was not designed to beat outside the human body and yet, each child represented just that - a parent's heart bared, beating forever outside its chest.”

Autism isn’t just about something that’s missing. It’s about the remarkable presence in someone’s life that brings out understandings often not seen and compassion almost endless. It is me that is mulling about, feeling incapable of functioning at such a high level, of overcoming moments of stress with flashes of brilliance. It takes coming to this camp each summer to expose my own limitations and feelings of insecurity and lack of capability. Camps like this exist because the human race never gives up. More than that, the human heart is capable of spotting beauty in a world of chaos. Locations like this strive to be one of those stones that an autistic child can step on for the next part of its journey. Or as author, Adele Devine, puts it: “My aim is to sort the jumble of information we throw at these children and present it in such a way that they will have a greater chance of achieving independence and fulfillment.”Thank you to Londoners Fran, Jim and Alyssa Slee, for being these champions of the special place where such learning can continue, and where people like me can overcome my own limitations, at least for a time, and see the world for the multi-dimensioned wonder that it really is.