Monday, June 12, 2006

Down but not out

Down syndrome: the positives
Parents, researcher challenge perceptions

Ben Allard hit his dad's underhand pitch 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 when doctors told them during pregnancy their child would be born with the genetic disorder, they 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.

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.

Skotko, who has a sister with Down syndrome, said that while most parents are understandably shocked by a Down syndrome 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. "Parents are rarely being told that people with Down Syndrome can live rich, full lives."

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