Seven volunteers trained to provide help to parents of children with Down syndrome

Having a child with Down syndrome may be daunting to some new or expectant parents, but a local association has recently seen an increase in trained volunteers, who work to provide suggestions to those who need them.

The Heartland Down Syndrome Association has recently gained seven new trained parent-support volunteers. Before the training, provided by the Down Syndrome Association of Greater St. Louis, Dr. Julia Pewitt-Kinder was the only trained volunteer.

Now, Cris Byrd, Windy and Derrick Carlton, Theresa Essner, Tamilla House, Sandy Miller and Claire Watson have joined the association's work as trained and registered volunteers.

The Heartland Down Syndrome Association began meeting in 2006, and although its members were not formally trained, they aimed to help other parents of children with Down syndrome.

Down syndrome is a chromosome variation that can affect children of all races and economic levels. It is one of the most frequently occurring chromosomal abnormalities, and is usually caused by an extra copy of Chromosome 21, according to the National Institute of Child Health and Human Development.

Individuals with Down syndrome may display a variety of physical and mental signs, including mild to moderate mental retardation, almond-shaped eyes and poor muscle tone. Several other conditions, including congenital heart disease, hearing problems and intestinal problems may also present, according the the institute.

The training the new volunteers received included learning the answers to questions parents of children with Down syndrome commonly ask, having empathy, being nonjudgmental, keeping their interactions confidential and understanding their own limits as supporters.

FRED LYNCH ~ flynch@semissourian.com Ella Kinder played in her kitchen with her mother, Dr. Julia Pewitt-Kinder, at their Cape Girardeau home. Ella has Down syndrome.

Claire Watson, president of the local association, said the organization works to meet the needs of children with Down syndrome, support parents who are taking care of the children and provide education about the syndrome to the community.

Windy Carlton has been an unofficial volunteer for five years. She feels it's important for parents to learn about Down syndrome.

Local churches and friends have her contact information for parents of children with Down syndrome who wish to talk with her. "I tell them they're not going to feel one thought or emotion that I haven't felt," she said.

She said most of the support she offers is by phone or e-mail. "They don't want a lot of people on top of them," she said. "I may talk to parents once or twice and never hear from them again. There's no hard feelings. They don't want a friend, they want information."

Southeast Missouri Hospital and Saint Francis Medical Center have new parent information packets given to parents of children with Down syndrome that include local contacts.

New parent support volunteers are equipped with the firsthand experience of having children with Down syndrome. The volunteer parents are familiar with available resources and know the importance of having up-to-date information about the syndrome.

Dr. Julia Pewitt-Kinder said the formal training is largely about learning how to listen.

She has been a volunteer for the new parent support group for three years. She started volunteering after the birth of her daughter, Ella, who is now 3 1/2 and has Down syndrome. Not expecting a child with Down syndrome, she sought training from the Down Syndrome Association of Greater St. Louis.

Pewitt-Kinder was a family practitioner before the birth of Ella. Now her full-time job is taking care of Ella and speaking about Down syndrome nationwide.

Having a child with Down syndrome was a surprise for Pewitt-Kinder, as she elected not to undergo genetic testing during her pregnancy. She said a diagnosis of Down syndrome would not have changed her actions while she was pregnant.

Still, she said that upon the diagnosis, she felt as if she had lost the child she had imagined while pregnant and she felt like she was now getting a different baby. Over time, she said, she realized her child was the same as any other and had the same opportunities available to her as many other children did.

Tamilla House of Cape Girardeau, a new parent support volunteer, has served as a liaison between parents of children with Down syndrome and local doctors for at least seven years.

"I enjoy being a contact person," she said. Her daughter, Carley, now 11, was born with Down syndrome in Memphis, Tenn., where resources were available following the birth of her child.

"I was given a book, all kinds of literature, phone numbers and addresses of where I could get therapy for my daughter. Carley's therapy began when she was just six weeks old," she said.

House said the training helped by providing a checklist of the most important things parents of a child with Down syndrome should know.

Parent support volunteers are matched with new families with consideration to the parents' age and the order of the birth of their baby. Volunteers are assigned to the family for a year. Guidelines include providing suggestions if parents indicate interest, listening while the parents talk, being honest about limits in knowledge, attending meetings to continue education, updating resources and sharing experiences.

Group meetings are held from 10 a.m. to 2 p.m. the second Saturday monthly at the Saint Francis Health and Wellness Center. Meetings include educational programs to help meet the needs of children with Down syndrome, informal sharing and support and social events for children and families.

During 2007, both a family picnic and a holiday party were held. A second family picnic is scheduled for Sept. 20. A speaker from the Special Needs Alliance will offer a seminar on special needs trusts Sept. 27. A location has not been set yet.

For more information, call Claire Watson, president, at 334-5685 or Theresa Essner, vice president, at 335-2781 or e-mail hearlanddsa@msn.com.

cpagano@semissourian.com

335-6611, extension 133

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