Down syndrome association holds first Christmas party

~ Families in the group share resources and information to help meet their children's'needs.

The Heartland Down Syndrome Association held its first Christmas party Saturday at St. Vincent's Family Life Center. About 20 families attended.

Santa, gifts, food, popular children's videos, an oversized play ball and companionship were elements of the gathering.

Sponsored by the Down Syndrome Association of Greater St. Louis, the group started a little more than a year ago. The group takes part in fun activities and education about Down syndrome. Those who have experience share resources and information to help meet the needs of the children in the group.

Children with Down syndrome have a genetic disorder caused by the presence of all or part of an extra 21st chromosome. Down syndrome is often associated with impaired physical growth and cognitive ability as well as facial appearance.

Tamilla House now lives in Southeast Missouri but she and her family are originally from Memphis, Tenn. Her middle child, Carley, 10, has Down syndrome. House has experience as an advocate for future parents. She gave an example of one of the things that can help parents of Down syndrome babies that they may not read in books -- a special way of holding a Down syndrome baby.

"They often have low muscle tone and gathering their arms and legs together, making a little seat for them, is best," she said. Helping support their arms and legs makes them feel more secure.

Because Carley is one of the older children in the group with Down syndrome, House wants to help others. Information about Down syndrome for the parent, a game plan and people to support the family are important to House. Early intervention for the child is also important to her. Carley's therapy started when she was 6 weeks old.

The association's secretary, Tiffany Pobst, is the mother of a 2-year-old girl named Elijah. Blond and blue-eyed, she was born when Pobst was 18. Sitting on her mother's lap, the toddler waves "hi" to people she knows and says "ho, ho, ho" when Santa is mentioned.

Pobst, also a committee member for the young moms Down syndrome group of greater St. Louis, said young moms have different needs -- typically just starting out, they are juggling school and work in addition to new motherhood and special concerns for their Down syndrome child.

Learning process

As soon as children are identified with Down syndrome, the learning process begins.

Pobst said that her experience at Saint Francis NICU was outstanding. She felt they did everything possible to set her up to successfully care for a Down syndrome child. When a parent has a Down syndrome child the hospital gives them information and training. They're also visited by a parent advocate.

Shock, grief, defects of the heart, vision and hearing and the uncertainty about the outcome of health issues are just some of the issues that may face new parents of Down syndrome children.

"Having Elijah defined my life," Pobst said. Majoring in organizational administration with a minor in family studies, Pobst wants to work at a not-for-profit organization with children who have disabilities.

The Heartland Down Syndrome Association welcomes new members. It meets from 10 a.m. to noon monthly on the second Saturday at Saint Francis Health and Wellness Center conference room 3.

President Claire Watson said half the meetings are formal and educational and others are just times for sharing ideas and resources. In the past, they have had Southeast Rehab and Special Olympics speak at their meetings. A future meeting she looks forward to includes a Down syndrome self-advocate and his father, a reading teacher for those with Down syndrome. For more information, call Pobst at 573-887-1813.

cpagano@semissourian.com

335-6611, extension 133