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It was perhaps the last thing Carissa Thilgen had expected — to learn the child she was carrying inside her would be born with Down syndrome. Then she found Down Syndrome Connection of the Bay Area and its support group, Early Connections.
“My husband and I felt the gamut of emotions in the wake of our prenatal diagnosis,” she says. “Walking into that first support group meeting, admittedly I had my stomach in knots. I was nervous about what I’d see, what I’d hear and how I’d feel about it all. The unknown can be frightening.”
But Thilgen says their fears “melted away” as they listened to other parents share their experiences and watched their adorable children laugh and play. Their fragile hearts, she says, were buoyed.
“Down syndrome is just a part of who they are,” Thilgen says. “It does not define them or their families.”
Putting families together to share their experiences and providing information and support to Down syndrome parents and families is the goal of the Down Syndrome Connection of the Bay Area.
Parents don’t know what to expect, and their family and friends are at a loss for words. Congratulations become mumbled obligations, if they come at all. The joy that surrounds most pregnancies and births is blunted.
Cathleen Small, director of the organization’s Family Support and Medical Outreach, knows from experience. When her son, now 8, was born, her medical provider and hospital were less than helpful. She had questions and worries, but they had no answers for her.
Three weeks after giving birth and doing a lot of research, Small found herself at a a support group meeting at the Down Syndrome Connection of the Bay Area. There she met other parents who had gone through — and were still going through — what she was.
When her son was 3, she began working for the group doing medical outreach and making sure doctors and hospitals have access to information to share with families. Now, Small oversees the Expectant and New Family Program.
The organization serves as support to parents, children and families, with an overriding message of assurance.
“Parents often feel that their entire lives have changed. We tell them that life is going to look pretty normal,” Small says. “Pieces have changed, but it will look very much like it did before.”
Nothing could be more reassuring to an expectant parent, says Thilgen, of Dublin, than to be surrounded by other parents who are “on the other side” and can speak with honesty, humor and perspective.
“To realize you’re not alone is invaluable,” she says. “And for my husband and I, personally, to look into the literal faces of Down syndrome made us excited again to meet our son.”
Danville-based Down Syndrome Connection has been helping parents and families for more than two decades. The group reaches out to new parents through its Early Connections program, invites them to group meetings and gives them a welcoming gift that includes handmade quilts and hats, a onesie from Seanese, a company run by Sean McElwee, a man with Down syndrome, toys and lots of information and resources.
The organization has received funding this year from Share the Spirit, an annual holiday campaign that serves disadvantaged residents in the East Bay. Donations helped support 49 nonprofit agencies in Contra Costa and Alameda counties.
“Have our fears about Down syndrome evaporated? Of course not,” Thilgen says. “Parents will always worry about their children. We worry about our typical daughter constantly, and we will worry about our son, but we know that through any hardships we may face, any obstacles that need to be overcome, we have a village we can rely on.”
Donations through Share the Spirit will help provide support to the Expectant and New Family Program, including providing pre- and postnatal consultations, comprehensive parent packets (in English or Spanish) and welcome baskets, outreach to medical professionals, Early Connections support groups for families with children 4 and younger, music therapy sessions, and an annual holiday party for families of all ages.
Share the Spirit
The Share the Spirit holiday campaign, sponsored by the Bay Area News Group, funds nonprofit holiday and outreach programs in Alameda and Contra Costa counties.
To make a tax-deductible contribution, clip the coupon accompanying the print version of this story or go to www.sharethespiriteastbay.org/donate. Readers with questions, and individuals or businesses interested in making large contributions, may contact the Share the Spirit program at 925-472-5760 or sharethespirit@crisis-center.org.
