Awareness, acceptance and amazing gifts

Carlisle residents embrace experience with children who have Down syndrome.

About four years ago, Cori Guillaume found Tori Smarr in a grocery store. Three years later, Heather Fox-Kauffman found Cori Guillaume through a book and a phone book.

What brought them together was simple: Each had a little boy with Down syndrome.

At the time, the Carlisle residents say, they didn't know any other people in the area who had experience with Down syndrome. Support from family and friends was great, they say, but it couldn't take the place of learning with and from someone in the same situation.

These days, the three women and their families get together regularly. For the last few months, though, their meetings have been a little more formal, as they have undertaken the process of forming what they've titled the Central Pennsylvania Down Syndrome Awareness Group.

Their motto is "Empowering the future," and they say their goal is helping other families just like theirs.

"We want to be there for people if they need us," says Cori Guillaume, who is the group's treasurer. Her husband, group president Brian Guillaume, fleshes out the mission a bit, saying they envision events to educate parents on issues like early childhood intervention, medical problems and special needs trusts, as well as grants to help people with Down syndrome experience things like summer camp.

The group would also like to see community events such as movie nights and possibly dances, at which individuals with Down syndrome and their families could come together to socialize and support one another, Brian Guillaume says.

"We're learning through the school of hard knocks," says group secretary Andy Smarr.

The families agree that in the beginning, after their children had been diagnosed and they were trying to figure out how to proceed, they relied largely on the Internet. While that can be helpful, Cori Guillaume says, it also has a lot of misinformation.

"Eighty percent of children with Down syndrome are born to women in their 20s," she says. That is true for both her and Tori Smarr, she says, but because so many people don't realize that, they've gotten used to having strangers assume the children's grandparents are their parents. It is commonly believed that children with Down syndrome are born primarily to older mothers.

But, the group says, in addition to all the factual help, they desire to help others see individuals with Down syndrome the way they do: As amazing gifts from God. Each one is different, they say, just like everyone else, and they're not always perfectly behaved any more than other children are, but each one is precious.

"God doesn't give these children to just anybody," Brian Guillaume says. His wife agrees.

"We're not sent here so we can teach them," she says. "We were sent here so they could teach us."

Tori Smarr talks about how her son Nicholas collects friends at all the stores they visit, with people greeting him by name and giving him special treats. Now 6, the blond boy sits quietly in a chair as the adults talk, beaming.

Vice president Heather Fox-Kauffman's adopted son, Carson, 3, is not so quiet and begins to cry as he tires. Carson, Fox-Kauffman explains, was born severely premature at less than 2 pounds and has had significant health issues, including recent surgery. But, she says, his sister, 15-year-old Kaitlin Fox, can always cheer him up.

She calls Kaitlin over, and the teen eagerly gets down on Carson's level and makes a face him. Instantly he stops crying and turns a huge, delighted smile her way.

Carlisle residents embrace experience with children who have Down syndrome.