In San Francisco I lived with my husband for four years on a steep street, the kind of street only Dr. Suess or a Rice a Roni commercial might consent to explore. And up at the top the street, just where the grade evened out again to level, there was a home the same pale yellow shade as our own, and in the small driveway of that home, there was a fraying basketball net where most evenings after work, a father would be playing hoops with his son.
By car or on foot, I would pass the pair at least twice a week. The father had a scrap of silver hair that matched his spectacles and SWISH he cheered when his son made a shot, before reaching over to rub him tenderly on the back of the shoulder. The father, I guessed, was in his 70s. His son, small of stature, had a familiar upward slant to the eyes that told me, and every one else, that he had Downs Syndrome.
I would like very much to tell you the father's name was Stan and his son was Charlie. That Charlie's mom was just inside baking apple fritters and as fate would have it we all enriched each other's lives. But I would be lying. I never introduced myself. And worse, each time I observed them carrying out, on their driveway, a tradition begun long before my birth and one that could, to my mind, only end tragically, I thought to myself, "I COULD NEVER DO THAT."
At that time I was very involved in charity work, but I didn't understand it from the inside, the way that I do now.
My first son Noah was born, disabled, on that same steep street in San Francisco. And over the course of these last eight years I have come to know just how important company can be.
Amy pictured with her two sons, Noah (left) and Ezra (right)
What to Expect When You're Expecting failed to project what had been, since Noah's infancy, the ACCIDENT WAITING TO HAPPEN. Autism struck like an 18-wheeler in broad daylight on what was supposed to be a safe back road. In the consequent haze, first responders dismantled the pile-up of denial, but Autism Spectrum Disorder offered just that NO ORDER, and little resolve for injury.
Children on the spectrum are developmentally derailed by the age of two. Autism shatters communication and imaginative play, kills incidental learning, violates transition, scorns progression, sneers at sleep, and provokes children to bash their skulls against the very walls designed to keep them safe.
There IS a therapy proven to help kids with Autism. The science of Applied Behavior Analysis, or ABA, as it is called, is evidence-based and outcome-driven. Determine what you want the outcome to be—for instance, I want my child to use a fork—and then use ABA to "analyze the task" so you can break down the outcome into tiny teachable skills; then teach the skill, baby-step by baby-step, until that desired outcome is reached.
My son Noah has achieved hundreds of the outcomes that we have targeted for him. Toileting, for instance! Waiting On Line! Speaking! Data marks his progress. Day-by-day. Week-by-week. Year-by-year.
MY outcome is no less astounding. Somewhere, on the steep street of this unexpected journey, up past the bewilderment and anxiety, beyond the sadness and isolation, just where the grade evens out to level, I found Gratitude and Peace.
How ever in the world did this come to pass? I fear there is no data to report, nor can I break it down step by step, but I confide it has everything to do with GIVING MORE THAN I THOUGHT I COULD. I pour energy of course, into my children, and support their schools, but when, through this UJA, I direct my compassion and energy towards others who have been waylaid, when I help those who are unknown to me carry out, and carry on with, the rituals that keep them sane, I get this crazy feeling of community and belonging. Someone, somewhere is shouting, SWISH! We are all connected and as fate would have it, we can surely enrich each other's lives.
