New U.P. Down Syndrome Association offers families support
By Tori Wiese, 12, Demi Mathews, 9 and Elise Heide, 8

There is a new support group in the Upper Peninsula for the parents of kids with Down Syndrome. The group’s official name is the U.P. Down Syndrome Association. The group has been around for less than a year and meets the second Saturday of every month at 1:00 pm at the Peter White Public Library in Marquette.

People with Down Syndrome develop with an extra chromosome in each of their cells and because their chromosomes are “crowded” the condition can cause a delay in their physical, intellectual and language development. Cathy Dehlin, one of the co-founders of the group, has a daughter, Ella, three, who has Down Syndrome. Dehlin explains one way her group helps families.

"If you are a parent and you have a baby with Down Syndrome you might not know about special medical needs a child might have, some special therapies that they might need to learn how to speak more clearly, things like that,” she said.

Jennifer Walther is the other co-founder of the group and serves as the group’s president. She has a son, Ethan, three, who has the condition and she saw a great need for the group.

"I have a little boy with Down Syndrome and I recognized that there was no support in this area,” she said. “There wasn’t much awareness, there wasn’t much education, there weren’t even books in the library for me to check out, so I decided that we needed to start an association so we could not only help my family, but help other families as well.”

Walther said that this type of support is very important.

"It is very helpful to be able to talk to other people that have a child with Down Syndrome because they know where you’re coming from, they know the challenges that you face, and it just feels like another family that you can have to turn to if you have questions or you need help.”

Dehlin points out that the group also helps with public education about the condition.

“An issue that we struggle with sometimes is helping community members to learn more about Down Syndrome so they are more understanding of individuals with Down Syndrome,” she said.

According to Dehlin, people with Down Syndrome grow up, have jobs and some marry.

"First off, have high expectations of individuals with Down Syndrome. They are capable of so much,” Dehlin said. “Get to know them, Say hi. They are so very friendly. Just don’t be afraid. Just enjoy them and play with them, be friends with them like all your other friends. They are more alike than different.”

June Hudson of Marquette has an adult daughter, Vivian, with Down Syndrome. She joined the group to see of she could be of any help because, she says, she has been through it all. She can remember when people weren’t very kind to people with Down Syndrome, it was especially hurtful when people would stare.

"I’d say, well, do you want a picture of her? Because it was frustrating, you know, to have people staring and staring,” Hudson said. “Now they don’t do it as much because of, you know, Special Olympics and everything.”

Parents from all around the Upper Peninsula, including as far away as Sault Ste. Marie and Calumet, attend the meetings. According to Walther, they are the only support system in Upper Michigan, the next closest being in Grand Rapids.

Sandra Lynch, from Arnold, has a nine-month-old daughter with Down Syndrome. She attends the meetings to learn all she can to improve Mikayla Ann’s life.

"When I first found out my daughter had Down Syndrome I was introduced to Kathy Dehlin and she was able to encourage us that this is not something that we wouldn’t be happy with, and that we would be blessed many opportunities,” she said.

That sort of early introduction has been a focus of the group according to Dehlin. One of the group’s first activities was to make informational bookmarks to distribute to area doctors’ offices.

"When [the doctors] have moms who are going to have a baby who has Down Syndrome, they can help those moms find their way to our group,” she said. “We are able to give them information even before their baby is born so that when they do have their baby they are ready and know as much as they can about Down Syndrome. They also know that they aren’t alone…there are other parents in the community who welcome them into their family here in the group.”

At each monthly meeting the group discusses how they can support each other including making gift baskets for new parents of children with Down Syndrome.

They plan awareness events, such as the annual Buddy Walk, and do a number of other educational programs through doctors’ offices and clinics.

The group is planning a Web site but does not have one yet. To learn more about the group, or to join, call Dehlin at 249-3155 or Walther at 273-0538.