Three recent articles about Down’s Syndrome and people who live with it:
A mom reacts to the recent call by the ACOG to do Down Syndrome testing on all pregnancies:
She was a fresh-faced young woman with a couple of adorable kids, whiling away an hour in the sandbox at the park near my home. So was I, or so I thought. New in town, I had come to the park in hopes of finding some friends for myself and my little ones.
Her eyes flicked over to where my daughter sat, shovel gripped in a tiny fist, and then traveled quickly away. The remark that followed was directed to the woman next to her, but her voice carried clearly across the playground. "Isn’t it a shame," she said, an eyebrow cocked in Margaret’s direction, "that everyone doesn’t get amnio?"
It’s been more than 20 years, but I saw the face of that woman again when I read about the recommendation from the American College of Obstetricians and Gynecologists (ACOG) this month that all pregnant women get prenatal screening for Down syndrome. I worry that universal screening brings us all closer to being like that woman at the sandbox — uninformed, judgmental and unable to entertain the possibility that people with disabilities have something to offer.
Two years ago, Anita Krach of Streamwood learned that her fetus had Down syndrome through a phone call from a perinatologist she had just met during the tests.
Later that day, the same doctor and a genetic counselor outlined the health problems associated with the condition at every stage of life for Krach and her husband, Michael.
"There was no positive thing that was said," Krach said. "Not one."
As Krach, then 18-weeks’ pregnant, left the emotional session, the genetic counselor warned her not to call a Down syndrome support group because, she said, "they’ll paint a rosy picture."
Doctors acknowledge they’ve heard such scenarios but say they’ve become more sensitive and balanced, in part due to the efforts of Down syndrome organizations.
"We never want to give the impression they should or they have to terminate," said Elyse Weber, a genetic counselor at the University of Chicago Hospitals. "What we’re here to do is give them information and give them an environment to make the best decision for them."
Krach’s son Michael, now a happy 2-year-old, receives therapy six times a week, has walked since he was 18 months old and has a vocabulary only slightly delayed, his mother said.
Though she rejoices in his achievements, Krach shudders as she recalls the agony of her decision–days not eating or sleeping as she wrestled between religious beliefs that said abortion was a sin and the notion that she didn’t want to bring a child into the world only to suffer.
Krach decided to have the child after talking to two mothers of children with Down syndrome, one of them Gianni.
At Dr. Ravi Trivedi’s office in Hoffman Estates, Gigi handed the doctor a colorful calendar featuring herself and other children from the playhouse dressed as actors, painters, even synchronized swimmers.
"You are beautiful," Trivedi marveled as he hugged the little girl who is learning to read and loves to sing, dance and pose for the camera.
Trivedi said his perception of Down syndrome has changed since Gigi’s birth.
"There is so much variation [in mental retardation] that most patients with Down syndrome do not have major problems," Trivedi said.
"When you really see the kid growing up, they’re normal."
My Lovely Son; The Hollywood Star:
Sandy Lewis was devastated when she learned her son had Down’s syndrome. But here she tells how Max overcame disability and prejudice to achieve his dream and win a leading role in a new film – alongside Cate Blanchett and Bill Nighy – which is being tipped for Oscar success.
On a blisteringly hot September day, Cate Blanchett is on a film set dancing with my 13-year-old son, Max. With her usual elegance and charm, Cate holds his hands and moves her body to the rhythm as the cast and crew cheer and clap. Max loves every minute of it.
Perhaps I shouldn’t be surprised.
For Max, who has Down’s syndrome, life is one big, glorious adventure. Thanks to his passion and talent, he is starring in a new Hollywood film alongside Blanchett, Judi Dench and Bill Nighy, and is ratcheting up a list of parts any actor would kill for.
And this blog entry of Barbara’s – "About that extra chromosone"
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.
What did Jon Will and the more than 350,000 American citizens like him do to tick off the American College of Obstetricians and Gynecologists? It seems to want to help eliminate from America almost all of a category of citizens, a category that includes Jon.
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