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TVNPA Members Making an Impact Down syndrome connection of the bay area

When Cathleen Small gave birth to her son Sam in 2012, she didn’t know where to turn. Sam was born with Down syndrome, about which Cathleen knew nothing. An internet search connected her to the Down Syndrome Connection of the Bay Area (DSCBA), a TVNPA member organization, and changed her life.

Newborn Sam

Cathleen remembers her first DSCBA support meeting, which she attended when Sam was three weeks old, as “the moment I first felt that everything was going to be okay…that Down syndrome wasn’t going to rule our lives.”

Cathleen and Sam began attending monthly support group meetings, where Cathleen connected with fellow parents. Now age seven, Sam has completed two summers in DSCBA’s Communication Readiness Program and attends weekly Peer Development classes.

In 2015, Cathleen became DSCBA’s Medical Outreach Alliance Director, which has enabled her to support parents and medical practitioners with compassion, information, and resources. “It’s vitally important to introduce new parents to the services that DSCBA offers.”

The Smalls: Sam, Cathleen, Theo and Chris

Established in 1998, DSCBA's mission is to empower, inspire and support people with Down syndrome, their families and the community that serves them, while fostering awareness and acceptance in all areas of life. To fulfill that mission, DSCBA offers numerous services including family connection meetings, peer development classes, music therapy, a summer communication readiness program and a strong alliance program with Bay Area schools and medical facilities. DSCBA serves more than 1,000 families.

Mat and Theresa Hidalgo discovered DSCBA in December 2017. “The day Ava was born, her pediatrician suspected she was born with Down syndrome,” says Theresa. “We immediately contacted DSCBA and had a very uplifting meeting with their Director of Family Support."

"DSCBA has been incredibly helpful. They have equipped us with the resources we need to be the best advocates, parents, teachers, and students possible. They connected us with our amazing pediatrician and with other families that have gone through similar experiences as ours. Most importantly, DSCBA has shown us that we are not alone in our journey.”

Ava

DSCBA is a lifelong resource for people with Down syndrome, from childhood through adulthood. Thirty-three-year-old K. Leigh Alfrey is a longtime DSCBA client who serves as an assistant teacher in DSCBA’s Early Education Peer Development program and participates in DSCBA’s Adult Peer Development class.

K. Leigh was born in the late 1980s, when Down syndrome was viewed very differently and few resources were available. “When we got the diagnosis, the doctor handed us a brochure titled ‘Your Mongoloid Child’ and ushered us out the door,” says K. Leigh's mother Layne. “There was no support, social worker, follow-up, or internet. We were completely in the dark. The brochure basically said: Don’t expect much.”

When K. Leigh was six months old, the family joined the Down Syndrome League, which later became DSCBA. “The group means everything to us,” says Layne. “It’s a community that cares for and supports one another. K. Leigh and I would be lost without DSCBA. She wouldn’t be where she is today without DSCBA’s support.”

K. Leigh as a young child and today

"K. Leigh is surrounded by loving and supportive people who believe in her abilities, not her disabilities. The classes give her a social outlet, and working with the little ones has built her self-esteem. She loves to regale us with tales from the classroom! Getting a paycheck makes her feels incredibly empowered.”

For more information about DSCBA visit www.dsconnection.org.

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