Opening Communication: Down Syndrome Awareness in Eastern Iowa

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By Chris Earl

MARION, Iowa - Under the summer sunshine at Thomas Park in Marion, Mayson Flege and Adelynn Harlan blow bubbles as their mothers take stock of the recent years of parenting.

"Having two children with Down Syndrome and one is adopted that, obviously is going to bring the eyes," said Erin Harlan, of Cedar Rapids. She has three children: Adriana, 5, Adelynn, 4, and a six-month-old girl, Alexandria.

"You notice it," said Amy Flege, of Ely, regarding the unspoken gaze of other parents and children at a park or pool. "As (Mayson) gets older, it's easier to deal with. But she plays with the other kids, goes up to them and asks them to play. I think the more people get around her, the more comfortable they are and I'm never afraid to answer a question."

Crossing paths with a child or adult touched by Down Syndrome is not that uncommon as an estimated 400,000 people in the United States are directly affected by it.

Flege is leading a push to bring an awareness center to Eastern Iowa. Gigi's Playhouse is currently in 13 locations throughout the nation, primarily in the upper Midwest and with centers in Urbandale, Moline and Sioux City.

What would it take to bring one of these centers here?

"A lot of money raising," said Flege, who said the annual operating cost for one of these centers is about $60,000. Gigi's Playhouse specializes in educational advancement, life skills and increased awareness for those closely impacted by Down Syndrome.

In recent weeks, Flege's daughter Mayson, 7, completed a dance recital through a Cedar Rapids dance studio, dressed in her frog outfit.

"You don't know what to expect," said Flege. "Every child with Down Syndrome is different, just like our kids. We waited a year to do the dance recital. She knew her dance and knew where to be."

All of the parents who met with us at Thomas Park recently insist their lives are not that much different than those untouched by Down Syndrome. Yet their hope is that a center that specializes on this condition can also open the lines of communication as well as offer the support for their families.

Amanda Tomlinson, of Atkins, is just starting the journey as a parent to Blake, her eight-month-old son.

"The first time we got that diagnosis, we thought it was a label," said Tomlinson. "It was hard to hear that label. There was nothing wrong with him. He was medically fit and happy and is sleeping through the night. He's just a perfect little baby and that label just didn't mean anything to us and it shouldn't to anybody else."

"Just welcome us," said Harlan. "Don't be scared of our kids. Educate yourself and your kids on how to interact. They might just have to be a little more cautious and not be up in their face right away."

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