Word: hebein
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...Special-needs dolls, and Down Syndrome dolls in particular, have come in for criticism from parents who believe they pigeonhole their children and rely on stereotypes. "It's a scary image for a lot of families," says Sheila Hebein, the executive director of the Chicago-based National Association for Down Syndrome. "They're highlighting differences that do not exist in all of our children. Certainly most do not have their tongues hanging out." In fact, she says, many work hard in therapy to improve muscle tone so they can better control their mouths. (Dollmaker Parks offers a nonprotruding option...
Sheila and Peter Hebein learned that their first and only child had Down syndrome on the day he was born, in 1972. "I remember kind of stopping breathing," Sheila recalls. Prenatal testing was rare in those days, and because she was only 30, she was not a candidate. "One of the most challenging things about that day is that you're on a great high because you just had a baby," she says. "Then someone comes in and says, 'Yeah, you had a baby, but ... ,' and how they say that but is critical." The Hebeins, who live in Evanston...
Thirty-three years later, fewer women are surprised in the delivery room the way Sheila Hebein was. Screening for Down syndrome became a routine part of U.S. prenatal care around 1990. Typically, women are offered a "triple screen" blood test during the second trimester of pregnancy (see chart). The results are entered into a computer along with the mother's age, and the machine spits out her individual risk of carrying a child with Down. If the risk is high--say more than 1 in 300--she will be offered amniocentesis, a needle-in-the-belly test that allows doctors...
Though doctors greeted the study as a breakthrough, the good news was tinged with irony for parents like the Hebeins. They have raised a child with Down syndrome in an era of opportunity for the disabled and have helped redefine what such children are capable of. Chris Hebein is a remarkable example. Having graduated from a special education school, he has worked full time for the past 12 years as a mail clerk at Rotary International in Evanston. Never late, never absent, Chris Hebein adores his work and takes pride in his ability to sort mail at top speed...
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