Fulfilling lives possible for people with Down syndrome, with proper care

‘We just want these kids to be valued and respected’

The Lexington [Kentucky] Herald-Leader carries a profile of Julia Steinman, a teenager with Down Syndrome, that launches into a deeper exploration of what new parents of children born with Down Syndrome need to know.

Julia’s family and other parents of people with Down syndrome want doctors to speak about the condition more positively. They say from experience that early intervention and a nurturing environment are helping many people with Down syndrome to graduate from high school and go on to live satisfying, productive lives.

Studies by Dr. Brian Skotko, a pediatrician at Children’s Hospital Boston and Boston Medical Center, have shown that women whose fetuses or children are diagnosed with Down syndrome often receive inaccurate, incomplete and insensitive information. “Obstetricians simply do not know what the most up-to-date portrait of Down syndrome is,” said Skotko.

Brighter Tomorrows, an interactive educational tool for doctors, aims to change that. It asks doctors to congratulate parents on the birth of their child. It tells them to point out the physical characteristics their child has, how it might point to Down syndrome, and to refer patients to parent groups and other resources.

The module is designed to get physicians thinking about how they tell mothers about Down syndrome, said Harold Kleinert, executive director of the Human Development Institute at the University of Kentucky.

… “We just want these kids to be valued and respected,” said one mother.

This entry was posted on Friday, April 11th, 2008 at 1:49 pm and is filed under Down syndrome, parents, personal stories, stereotypes, young adults. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.  Email This Post