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Seeing strengths, not limits

Ben Allard hit his dad's underhand toss solidly and began circling imaginary bases in his Franklin backyard. A 7-year-old with Down syndrome, Ben crossed home plate and celebrated by bear-hugging his younger brother, Max . Looking on, the boys' parents, Mike and Beth Allard, shared a smile.

Today, the Allards can't imagine life without Ben, a warm-hearted boy who loves hockey and high-fives. But in telling them during pregnancy their child would be born with the genetic disorder, Ben's parents say, their physicians described a life scarcely worth living.

``The way they told you, it was like they were telling you your son was in a car accident," said Beth Allard. ``And we had to decide whether to take him off life support."

For parents who have received a Down syndrome diagnosis during pregnancy or at delivery, the Allards' story is probably familiar . Brian Skotko , a joint-degree student at Harvard's John F. Kennedy School of Government and Medical School, last year published two research papers that concluded physicians often relay the news in an overwhelmingly negative way, focusing on the limitations and hardships a child with Down syndrome may face.

In response to Skotko's studies, US Senators Edward Kennedy of Massachusetts and Sam Brownback of Kansas have introduced a bill that would require doctors to provide current medical information about conditions like Down syndrome and referrals to support services. Kennedy, whose late sister Rosemary was mentally retarded, favors abortion rights and is an outspoken advocate for people with disabilities. The medical information legislation is now before the Senate Committee on Health, Education, Labor, and Pensions.

Of the 1,250 parents of children with Down syndrome surveyed in Skotko's work, many reported that doctors used insensitive or offensive language in communicating the diagnosis. Many said they were advised to put their baby up for adoption or were scolded for not having prenatal testing to identify the condition early in their pregnancy.

Skotko, who has a sister with Down syndrome, said that while most parents are understandably shocked by the diagnosis, they need to know that individuals with Down syndrome are increasingly living independent lives.

``Too often, the potential of children with Down syndrome isn't conveyed," Skotko said.

Approximately one of every 1,000 children in the United States is born with Down syndrome, a genetic cause of mild to moderate mental retardation. With studies estimating that as many as 80 percent of Down syndrome pregnancies are terminated, Skotko's findings have sharpened fears, particularly among advocates for people with disabilities and among abortion opponents, that doctors are subtly pressuring -- unconsciously or otherwise -- women to have abortions.

``I felt they wanted to do everything they could to convince us to terminate the pregnancy," Beth Allard said, as her husband nodded in agreement.

For Beth Allard, the doctors' depiction of Down syndrome raised doubts about continuing the pregnancy. But her husband was steadfast in his conviction to have their first born.

``For me, there wasn't a choice," said Mike Allard, who is Catholic. ``But it wasn't a religious thing. It was a dad thing."

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