By John Kelly
Wednesday, December 20, 2006
The doctors at Children's Hospital treat children, but they also teach parents about their child's diagnosis. My assistant, Julia Feldmeier , tells the story of how one doctor empowered a Dickerson family.
A drienne Sturges poses a question: "When your children are born, do you say, 'Let's hope they're a C student,' or 'Let's hope they're an A student'?"
"Then let us hope for the A," she says.
For Adrienne, whose 4-year-old daughter, Clare, has Down syndrome, this is not an issue of grades -- it's an issue of expectations and goals, of knowing how high to set the bar. Down syndrome, which affects more than 350,000 Americans, is a chromosomal abnormality in which children are born with an extra 21st chromosome that causes delays in cognitive development.
So when Clare showed signs of readiness for potty training at just 2 1/2 years old -- earlier than anticipated -- Adrienne and her husband, Kevin, briefly worried that it was too soon, that Clare would be too frustrated.
But Clare ditched the diapers, and her parents remembered the important distinction between teaching to their daughter's cues and teaching to their daughter's diagnosis.
For this they thank Dr. Kenneth Rosenbaum, a geneticist at Children's Hospital -- the man who, on the day Clare was born, told Adrienne and Kevin that their daughter had Down syndrome. He delivered this diagnosis matter-of-factly, without sugarcoating -- a candor that made the couple appreciate what he told them four weeks later, when they asked what kind of life they could realistically expect for Clare:
"He immediately responded, 'The sky's the limit,' " Adrienne recalls.
There are steps to be taken to ensure that no outside limits are placed on Clare's potential. One is recognizing that it's the child before the diagnosis, which is why the Sturgeses are adamant that their daughter not be referred to as a "Down's kid."
"She's Clare before she's Down syndrome," Kevin says. "You wouldn't refer to a child with cancer as a 'cancer kid,' so why this?"
Dr. Rosenbaum, who estimates that he's seen 2,000 patients with Down syndrome during his 35 years at Children's, refers to these patients simply as "our children."
"Just because the child has an extra chromosome 21 doesn't mean that all those other genes aren't doing what they're supposed to," he says. "It doesn't necessarily change who they are or the things they can do well or the things they can enjoy in life."
Although the Sturgeses see Dr. Rosenbaum only once a year, they say they consistently call him for advice, to find out what types of specialists Clare should see and what they should be looking for in Clare's developmental progress. They have no delusions about their daughter's condition -- they know to expect delays in Clare's growth -- but by working with Dr. Rosenbaum, "we don't feel like her future has been written in stone," Adrienne says.
As for Clare, the girl with the sparkling blue eyes who loves to give hugs and swing on the playground monkey bars, who knows her ABCs in English and Spanish, she does not weigh in on all this talk of goals and limits. She is too busy climbing across her parents' laps, on top of tables and over the backs of chairs -- showing us, perhaps, that no obstacle will hold her back.Reaching Goals
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