When my middle son Avery was diagnosed with Down syndrome at five days old, my Dad said, “Ah, well. He’ll be one of the better ones. He’ll be the best.” It felt like a kindness, and I remember being buoyed by the thought. He may have Down syndrome, but by God, he’ll still be the best.
Fast forward six months and Avery had his own rolodex of phone numbers — for a speech therapist, a physical therapist, a family support specialist, a pediatrician and our family practitioner. His contact list also included an occupational therapist, a doctor of chiropractic, a craniosacral therapist, a naturopath, and a healer.
We had “therapies” every day, sometimes twice a day. When we weren’t with a specialist, I was working on Avery’s “program” at home. Every minute, every movement was an opportunity to engage him in his development and expand his potential. But the idea that I had control over it all made me a little crazy, and I lived in a perpetual state of worry — was I scheduling enough, teaching enough, doing enough? Should I be doing more?
Every three months, Avery was evaluated. The affect of constantly comparing him to “normal” left me feeling as if we lived in Deficit Land. We were always behind, of course, but the tougher question was, by how much? And were we gaining, or losing ground?
It all came to a frenzied head one afternoon when my friend Emily stopped by. She reached out to hold Avery (she is a great fan of his), and instead of leaning into her, as was his way, he tucked his head into my neck and burst into tears.
After running through all the usual reasons for crying, an idea born of mother’s intuition came to me — Avery was burned out. At this age, my other boys thought the world was made up of mommies and daddies; Avery’s world, to him, was made up of people who wanted something from him. In a word, therapists.
The realization came to me with great sadness. This wasn’t what I wanted for my son. If this was where being the best had gotten us, it was time to rethink my goals for him, and for me as his mother.
I know we need to measure; we live in a measuring world, and many of his services were dependent upon him having deficits, things like this: at twenty-eight months, he takes a few steps, here and there, but he is not really walking. He says a few words on occasion, but he is not really talking. These are things his brothers did by twelve months. It’s a huge gap, if this is what we measure it by.
But how to measure Avery’s love of books? Or the fact that he is the only one of my children who can keep a musical beat? He has a great social intelligence — Avery is the first one to say (sign) sorry when someone is feeling wronged or sad. And Avery is the first one to recognize when someone needs a smile, even if the man is tattooed and wearing a Hell’s Angels jacket. Avery is the first one to offer a hug.
He has character. He has integrity. He knows what he’s about. These are the things that are harder to gauge, these things are harder to quantify. But these qualities are what make Avery a unique and whole human being. It’s not the measuring that’s wrong, it’s what we choose to make important. And I am his guardian, his protector. It’s up to me to make sure his life has meaning and balance, a fact that I had overlooked in my quest to be the best.
And so Avery’s rolodex is tucked away in the cupboard, along with the cookbooks I never use, the scotch tape and the rubber-band ball and the kitchen twine. He has physical therapy once a week because he needs it, he has music class once a week because he loves it, and the rest, well, we’ve developed a new plan. We’re leaving our schedule open, so that we have plenty of time to build blanket forts, bake cookies, and eat snow. I am giving my son his childhood back, and if it means we drop right out of the race, so be it.