Sharing Support

Five-year-old Danny wriggles joyfully across the polished hardwood floor. With a grin so exuberant it's contagious, the tiny boy speeds away from his mother, Julie Hauf. She has stopped to chat with Lynn Chittenden, the driving force behind a Seattle-area support group for families of young children with Down syndrome.

"Look at him go!" cries Lynn, giving her friend a hug. "He was our group's sickest kid, our most precarious," she says, recalling her prayers during Danny's three open-heart surgeries and countless other medical challenges. There are more hugs as other families trickle in to the community center gym and their preschoolers head for riding toys, balls and play stations. A few minutes later, while some stay behind to watch the children, the parents move to a meeting room to hear an expert speak on maximizing every child's potential.

This busy scene of friendly support and expert advice was just what Lynn needed in 1994 after she and her husband, Tom, learned their second son, David, would be born with Down syndrome. Instead of referring them to such a group, a genetic counselor gave them a book that focused on late-term abortions and grief. "It had only one story about a woman who carried her baby to term," Lynn says, shaking her head at the memory. "There was no hopeful information about keeping this child."

Information and faith had guided her decisions as a design consultant, entrepreneur, wife and mother of their precocious 2-year-old, Tommy. So she researched, she read — and she prayed: "God, you brought me this far. You get me through."

"Still, it's a rough road," she says, referring to the grinding, daily extra needs and adjustments that disabilities place on parenting. Perhaps in answer to those prayers, she found — and helped organize — other parents with special needs such as Down syndrome.

During her pregnancy Lynn had rolled her eyes at suggestions that she find a parent support group. She felt overwhelmed just thinking about the extra appointments and demands that special needs would bring. Still, five weeks after giving birth she started taking David to special classes for physical and mental stimulation.

At the classes, Lynn and the other mothers heard about a social network for families like theirs. Through potlucks and "mom's night out" at a local restaurant, the families within this network shared their fears, joys and developmental milestones. "It felt so good to be with people who knew exactly the feelings we were feeling," says JoAnne Thelin, one of the founders.

Like Lynn, many of the women shared an incredible amount of anxiety, and they responded enthusiastically when Lynn came to dinner with a bigger plan. "I had just read about a deaf and blind man's difficult adjustment to a group home," she says. "I couldn't bear to think about that for David and these other kids. I said, 'We have to build a network to support them and their siblings when they're adults and we're no longer around.' "

On one level, they were already doing this through play times and get-togethers for their children. But this dream went further, envisioning the launch of an adult housing complex with a variety of choices. "People with children approaching adulthood tell me we're definitely on the right road. Even if none of our children choose to live there, it would meet a huge need," Lynn says.

They named their group LAUNCH (Leadership Advocacy Understanding Networking for a Community of Hope) and acquired nonprofit status and grant money to support its short-term needs as well as the long-term vision.

The demanding first years of a child's life don't leave much energy for parents' worrying about the future, so short-range goals focus on sharing information, bringing in speakers and networking with other groups. "Because our kids are near the same age, we can target the speakers to our needs," says Lynn, who attends conferences, combs Internet sites and contacts other groups and parents for resources. "Everyone has a different piece of the puzzle," she says.

"We've had wonderful speakers," Julie says. But nothing compares to the meals and encouragement she received when her son Danny was hospitalized and she was on bed rest with her third pregnancy. After more than four years in the same group JoAnne, whose son started first grade this year, says, "We've seen each other through other life changes — births, deaths, etc. — almost like extended family."

Forming a support group

LAUNCH parents believe their group is special, but not unique. Lynn Chittenden has the following advice for parents who need each other's support in any aspect of childrearing.

• Find a few like-minded parents.
• Find a place to meet. LAUNCH began in homes but now meets in a disabilities-friendly community center.
• Get the word out. Birth to Three centers are good places to find new parents, as are Web sites, bulletin boards and newsletters.
• Bring in speakers. If you are interested in a topic, other parents probably are too. "Local professionals have been more than happy to come and share what they know," Lynn says.
• Work toward a unifying vision, but don't be discouraged or disapproving if not everyone shares your passion.
• Split up the responsibilities so no one burns out.

If you would like to contact Lynn Chittenden for more information on starting a support group, call (425) 643-3768 or e-mail: lynn_chittenden@msn.com.