Milestones; what are they? We hear about them from the moment our children are diagnosed, for some, born. For most of us, they're not even mile"stones"; they're pebbles, fragments, grains of sand, achievements so small, so tiny, so minuscule that only we notice them. And we keep them to ourselves, afraid some "professional" "paraprofessional," "pseudoprofessional," or interfering busybody might discount them into oblivion.
I myself, have given credence to too many naysayers, too often, for too much. I've wallowed in the aftermath of the dream-stealers, driven to sitting in the corner with a can of Reddi Whip, jar of fudge, half-gallon of low-fat ice cream, a serving spoon, and no bowl, recalling the compilation of shortfalls, failures, and stagnations, silently crumbling. I have been robbed of the "bragging rights" so richly enjoyed by parents of the Gymboree, beauty pageant, geniuses, only to be replaced by a pity party award, from a contest I refuse to enter.
Raising a child with a disability can be fraught with seemingly endless periods of hopelessness. You bargain away abilities, offering them up to the Universe, in exchange for some other certainty, only to realize there is no certainty in disability -- except for one: individuals with disabilities don't fit the mold. And because they don't, school staff, career counselors and even parents, oftentimes give up all hope of pointing them toward a happy, successful and fulfilling life. More importantly however, it is because individuals with disabilities are individuals, they should be seen, treated, and encouraged as such. Paths should fit the individual, and measures of success should be uniquely calibrated.
This weekend, I hit a milestone of my own; I experienced what it was like to be proud of my son. Pure pride! Not the kind of pride mixed with an apology, nor the kind of pride you need to over-explain, or over-justify, for an outsider to even try to pretend to validate, but the kind of pride with which I'd never expected my family and I would be blessed. It is because of this experience, and in hopes of inspiring other parents, especially those at the beginning of their journey, or wallowing at the local Dairy Queen, that I wanted to share my steadfast belief that we need to pound their outdated mainstream, traditional, milestones into rubble, and create non-conventional pillars of achievement of our own.
My son, now 25 years old, along with other highly-talented, edge-pushing, opinion-changing artists with disabilities, received recognition for his art in an exhibit at the Ukrainian Institute of Modern Art. The exhibit, entitled A is for Artist, is not a "cotton balls and glue" "good job, Buddy," kind of art show. It is a legitimate display of artistic talent that validates just one of the alternate paths to success that individuals with disabilities are not often told they can take.
Twenty-five years ago, I would never have envisioned that my son would one day have a career, as an artist or otherwise. I feared there was no valued place in society to which he could aspire. And certainly, no persons other than those in his immediate family who would celebrate his contribution to any community. Yet, to my glorious delight, a young woman at the exhibit opening, said the most beautiful, eye-opening, reality-changing words I'd ever heard: "I'm a fan of your son's work." If that's not a reason to change anyone's belief-system toward people with disabilities, I don't know what is.
I have to thank The Arts of Life, a studio for artists with disabilities, for breaking all the rules; for seeing artists as artists, and measuring success as success. And especially for demonstrating that all people are different, but the right to hopes and dreams is universal.
I admit, I am not always a cup half-full kind of person; nor a half-empty either. In all honesty, most of the time, my cup's bone-dry. However, today my hope runneth over. So I wish the best for you and your family. And wherever you are on your journey, please lick your wounds and your spoon, and when you're ready, put one foot, or crutch, or wheel, in front of the other, trusting there will be a fork in the road that takes your child on his or her path -- and hopefully that path will be handicap accessible.
A is for Artist will be open at the Ukrainian Institute of Modern Art in Chicago through November 26. It is an inspiring, uplifting, validating experience, one which you will never forget.
My son Cole and me with one of his three paintings in the foreground.
Another of Cole's paintings above our the heads of our proud family.
