A group of mothers of children with Down syndrome have formed a support group to provide additional resources for families in their situation.
The Down Syndrome Ohana Hawaii welcomes families with children of any age, but Kalihi resident Ann Ziegler, 31, the group’s president, said they are especially interested in helping new and expectant parents, offering them a listening ear and lending whatever support is needed "because this is probably one of the scariest times, and there is a lot of unknown."
The group has so far visited riding stables and hosted a recent Easter egg hunt. Organizers plan to invite experts to share information on education, discipline, medical issues and other topics, including how to plan for after high school and finding employment for older children with Down syndrome, a genetic disorder that affects physical, intellectual and social development.
According to the National Down Syndrome Society, about 400,000 people in the United States are affected by the condition, which surfaces in approximately 1 in 700 births.
Although agencies such as Easter Seals Hawaii and Special Olympics serve children with special needs, the women who started the Down Syndrome Ohana say they were looking for a support group solely devoted to families with Down syndrome children.
In addition to Ziegler, the other mothers are Maureen McComas, Connie Smith, Shani Naleieha and Theresa "Momi" Akana.
Akana is executive director of Keiki o ka Aina Family Learning Center in Kalihi Valley, which was selected for the ABC television show "Extreme Home Makeover" in 2007. The project brought scrutiny by state officials and others into whether Akana was receiving improper financial benefits from her relationship with the nonprofit center.
Today she stills runs Keiki o ka Aina and said she was inspired by her 4-year-old daughter with Down syndrome to start Poli’s Place at the site as a preschool for infants and toddlers with special needs.
"Poli is just like any other 4-year-old. She’s sassy and wants to be pretty. We give her opportunities and expect her to do well and succeed," said Akana, 49, who has three other children.
McComas, who lives in Ewa Beach, said she holds high expectations for her 3-year-old daughter with Down syndrome, Gracie. "We want our kids to transition into the Department of Education," she said. "We want the kids to be ready for school and the schools to be ready for our kids."
Smith, whose son Greg is now 33, is founder and former president of the Down Syndrome Hawaii Congress, an advocacy group. The 72-year-old Waikiki resident said she hopes to share her expertise with new parents.
"Kids with Down syndrome are like any other kid; they just have an extra chromosome," Smith said. "They should call it ‘up syndrome,’ though. These kids are how God meant everyone to be … full of love."
For more information, call Down Syndrome Ohana at 843-2502 or visit www.dsohawaii.com.