Forum launched for parents of children living with Down syndrome
Jenny Casselman plays with her daughter on a multi-colored mat on the floor in their west Carson City home.
Her 14-month-old daughter, Kenley, is just like any other baby. She touches everything within reach, chews on a large toy block while smiling and clapping her hands.
Casselman 34, and her husband Gary, 35, a science teacher at Carson High School, call their daughter their T-21 angel – referring to Trisomy 21, the gene that causes Down syndrome when replicated. Casselman learned about her daughter’s diagnosis on the day she gave birth to Kenley.
Today, Casselman is trying to reach out to other parents who have children with the syndrome. She launched http://www.downsyndromebutnotout.com in March, a social networking website that features a forum on success stories and health concerns as well as a place for parents to upload photos of their children or reviews of books and toys. It’s free to join.
“There’s a lot of information that’s out there clinically about Down syndrome, but there’s not a lot of places to have dialogue specifically about Down syndrome,” Casselman said, while holding smiling Kenley upright.
For example, Casselman said children with Down syndrome should use toys that have a variety of textures and have a “cause and effect” aspect to help build the child’s cognitive abilities, such as a ball with beads inside. When the ball rolls, the beads inside move.
Down syndrome affects about 1 in every 733 births in the United States, according to the Centers for Disease Control and Prevention. About 350,000 Americans have the syndrome, which results in physical abnormalities, mental impairment and an increased risk for heart and thyroid defects, among others.
Casselman, who works for a local mortgage company, said she began planning for the website about six months after Kenley’s birth. She started asking questions and searching for answers. Aside from many websites with clinical information, Casselman said she longed for direct contact with parents who were going through the same experience.
“We’re in a smaller town and even though there are other children with Down syndrome it was a way to reach a larger community,” she said.
Casselman later adds, “Sometimes you get the best information from other parents.”
So far the website has grown through word of mouth. About 40 people have joined since March.
Colette McKenzie, president of the Down Syndrome Network of Northern Nevada, said Casselman’s website will help parents with children who have Down syndrome and live in smaller communities.
“It’s a much needed avenue for people, especially living in a state that’s so spread out,” said McKenzie, whose son has Down syndrome. “There just really isn’t much out there. And so when you live out in the rural areas it can be very difficult and you can be all alone.”
McKenzie said the cultural acceptance of people with Down syndrome has improved in the last 20 years.
Her son attends a regular first grade class and plays on a recreational soccer team with children who do not have Down syndrome.
“The best place for them to be is in their community and being an active part of their community,” she said.
McKenzie said she joined Casselman’s website and expects it to be a resource for parents looking for information about potty training to medical problems.
Despite the initial uncertainty of her daughter’s diagnosis, Casselman said her daughter will be raised in a world where people talk about the syndrome and celebrate it openly.
On her website, Casselman posted a YouTube video of Karen Gaffney, a woman with Down syndrome who swam across Lake Tahoe in 2007.
“I think the biggest message is, it’s not as scary as you would think,” she said. “There’s more to celebrate than there is to be scared of.”
She holds Kenley, as her daughter begins to play with another toy.
“It’s just as wonderful as probably everybody anticipates,” she said.