My son Jonathan has a little extra. A little extra enthusiasm, a little extra innocence, a little extra charm. Oh, and did I mention an extra chromosome? The one on the 21st pair that inspires so much fear in parents-to-be.
I suppose at one time I was fearful about Down syndrome. But in 1993 when they placed the blue-blanketed bundle in my arms and I could see he looked - well, just a little different - I actually felt a sense of awe. Here will be a challenge - so many things to learn.
It helped that we already had a few "normal" children. But other things had opened my heart as well. There was Amy, a six-year-old cutiepie we babysat for now and then. Amy's dad had left shortly after her birth - just couldn't get into having a daughter with Down syndrome. On the brighter side was the dad and daughter duo I'd seen a month before riding the merry-go-round. A gleeful almond-eyes three-year-old, a father helplessly in love.There's something special here, I thought.
In this society, for a parent without one to see something positive in a child with Down syndrome requires a paradigm shift, I know. But if my counterculture years … taught me anything, it was to question prevailing attitudes. I'd really never liked the dread surrounding Down syndrome, clouding the horizon for still-waiting-for-test-results expectant parents….
As many expectant parents find when they seek out the real professionals - parents involved with Down syndrome on a daily basis -- who are in much better position to comment on the so-called "quality of life" issues. Always there is an outpouring of loving response, personal variations on Emily Kingsley's theme in her famous essay, "Welcome to Holland": So you planned to go to Italy and landed in unexpected territory. At first you're disappointed. Then you notice the windmills and the tulips - beauty you never expected to find. You discover it's not a bad place after all.
My son Jonny, now 12, is a snappy dresser and an avid movie/Broadway buff, with a repertoire including songs from Phantom of the Opera, Annie, Bye, Bye Birdie and more. He loves people of all ages, but babies make him turn to mush. He has an uncanny way with animals. He loves school, but that doesn't keep him from loving the thrill of snow days more.
At home or school or church he is the first to offer help, to comfort someone who's down, and to laugh uproariously at the punch lines. His preschool teacher named him Ambassador of Goodwill. His public school kindergarten teacher, after 30plus years of teaching, said she'd never seen children as loving and caring as Jonny's classmates. The secret, she said, was Jonny…. Jonny certainly taught the children and me to look at the heart…
Having a child with Down syndrome has helped me see there's infinitely more to life than intelligence, beauty and "perfection." It's also taught me that not everything can be measured in dollars and cents - the benefits of full-inclusion extend beyond a child with Down syndrome to his classmates, teachers, family and friends…
He's been a gift I never would have thought to ask for, bringing lessons I never knew I needed to learn. The greatest surprise is this: Our life together has been less about my helping him reach his potential than about him helping me reach mine.
Sometimes when we're in a museum or a mall, in the middle of a good laugh, I catch someone off-guard, looking uncomfortable and standoffish. I know that as long as we live some will see Jonny as having a little less. I've learned he has a little more. And so does our world because he's here.
Larry Cirignano
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