My Little Extra
What a child with Down syndrome has taught his mother.
by Barbara Curtis
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 twenty-first 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 cutie pie 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, I know for a parent without a child to see something positive in a child with Down syndrome requires a paradigm shift. But if my counterculture years taught me anything, it was to question prevailing attitudes. I’d really never liked the dread surrounding Down syndrome that clouded the horizon for still-waiting-for-test-results expectant parents.
On the Internet in recent years I’ve “met” a few who’ve received the dreaded news, then logged onto Down syndrome newsgroups, trying to pick up the pieces. Often they describe pressure from geneticists and doctors to terminate the pregnancy and “try again.” These professionals are quick to point out the burdens of having a child with Trisomy 21: possible medical problems, heavier emotional demands, a child who is “less than.”
But then on the Internet, or face-to-face in their own home towns, they meet the real professionals — parents involved with Down syndrome on a daily basis, 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 own son Jonny, now 7, is a snappy dresser, an avid film buff, and a splendid host. He loves playing soccer and hearing both sides cheer whenever he kicks a goal. At home or school 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 30-plus years of teaching, said she’d never seen children as loving and caring as Jonny’s classmates. The secret, she said, was Jonny. When he graduated from her class, she wrote us: “As the Bible says, ‘The Lord does not look at the things man looks at. Man looks at the outward appearance, but the Lord looks at the heart.’ Jonny certainly taught the children and me to look at the heart; for he has a very big heart!”
Both confirmed what I’d seen all along. Jonny has a way of breaking the ice before others can think too long about their response to a child who is — well, just a little different. Then he brings out the best in them.
A step back
In fact, I bet some people would rather spend a day with Jonathan than with the experts who comment on his right to exist.
There’s Princeton professor/bioethicist Peter Singer, urging the right (or duty) of parents to terminate the life of a disabled child — up to 28 days after birth. Or Bob Edwards, world-renowned embryologist, predicting it will soon be a “sin” (his term) for parents to give birth to children with disabilities.
This would seem a giant step back for our enlightened society, which a generation ago ceased banishing children with Down syndrome to institutions, making it possible for them to grow into productive members of society. In a culture working overtime to root out prejudice and prosecute hate, these “expert” voices sound suspiciously supremacist.
But maybe it’s just that they suffer from their own undiagnosed disabilities, blinded by a caste system of individuals based on IQ, educability, and earning potential — paralyzed within their “perfect” paradigms.
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.
Before Jonny’s birth, I’d prepared announcements with a line from Elizabeth Barrett Browning: “God’s gifts put man’s best dreams to shame.” I sent them proudly, adding a note about his extra chromosome and our great love for him. (One friend’s comment: “Well, Barbara, he’ll never be president, but isn’t that just as well?” And this was 1992!)
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.