Web site builds community for families of special-needs kids

For the parents of a child with special needs, the Internet can be a road to self-empowerment, or a tangle of questionable detours.

The web has an overwhelming array of information on genetic diseases, disabilities and other childhood conditions. The challenge is finding updated, reliable information. A generic search under “autism,” for example, will bring more than 100,000 connections.

The Family Village, http://www.familyvillage.wisc.edu/, a web-based service run by the Waisman Center, provides the answer for thousands of users every week. Family Village serves as a portal into disability sites with a proven reputation for accuracy, and also provides a way for families to find common ground through discussion boards and chat rooms.

Now in its fourth year, the village is experiencing big-city traffic. Linda Rowley, director of the site, says Family Village usage has grown by about 25 percent a year. It averages about 700 visitors each day to its home site, and another 7,000 connect to other links within its umbrella.

And it’s a spacious umbrella for the families of children with special needs, providing connections not just for prominent conditions such as Down Syndrome and autism, but for rare diseases and disabilities that can leave parents feeling deeply disconnected.

“There’s a powerful sense of isolation for families with disabilities,” says Linda Rowley, director of the Family Village. “This gives people a community. People tell us they wish this site was available when their child was a newborn.”

The site breaks topics down by community pursuits, such as shopping, health care, schools, libraries and recreation. It features discussion rooms where parents can post questions on conditions like autism, attention deficit disorder, childhood depression or Down syndrome, or questions related to sibling and educational issues.

For Martha DeYoung, the site is an almost daily part of her routine. DeYoung works with the Portage Project, a community program that reaches out to families of special needs children in this central Wisconsin community. Family Village enhances her role as an information broker.

DeYoung’s 15-year-old son, Ben, has Down syndrome and the site has been a personal resource as well, she says. Lately, she has been following the details of a controversial new vitamin therapy available for Down syndrome kids. She hasn’t made up her mind whether to pursue it, but she is finding both points of view on Family Village.

“Medical information is more readily available,” she says. “It’s not just the doctors who are knowledgeable now. You as a parent are more knowledgeable and you can ask better questions about your child.”

Rowley says the site has made parents more sophisticated consumers of medical information. Family Village tries to pursue the most credible sources and some sites provide information on controversial treatments.

“There was some initial fear that if parents went on the Internet, they would go less often to their doctors,” she says. “In fact, the opposite is true. They find new things for their doctors to confirm.”

Family Village is part of the Waisman Center, a facility that specializes in research and outreach programs for children with disabilities. It is supported by the Joseph P. Kennedy Jr. Foundation and the Mitsubishi Electric America Foundation.