Down Syndrome Connection offers a safe, welcoming community

K. Leigh Alfrey was 3 months old in 1985 when she, her parents, and older sister moved to the Bay Area from Southern California. One reason for the move was that there were no organizations in the south that directly looked after children like her with Down syndrome.

Her mother Layne discovered a resilient community in the East Bay supporting families with a child with Down syndrome and quickly joined a support group for young mothers.

“They provided us with a wealth of information and guidance, a place to talk, share ideas and best practice. We got a real sense of security knowing we were part of a community and not traveling alone, ”said Layne Alfrey.

As K. Leigh grew, the Down Syndrome Connection of the Bay Area (DSCBA) in Danville provided help managing developmental delays associated with the genetic disorder, including exercises to increase low muscle tone, courses to improve gross and fine motor skills, and referral to a speech therapist. K. Leigh attended a public school and attended all inclusive classes from kindergarten through high school. She also went to weekly post-school classes (now THRIVE) with her peers.

In fourth grade, K. Leigh brought home a certificate of eligibility from school and told her parents that she wanted to learn the clarinet. Since then she has been studying with a teacher, first personally and recently through Zoom. K. Leigh loves gaming so much that her mother never has to tell her to practice. She overcame her fears and played solos at holiday concerts. In high school, she was invited to wear a green and yellow uniform and play the clarinet at home football games in the marching band at San Ramon Valley High School.

At 36, K. Leigh is a radiant, happy, cheerful, confident person. “I am the bravest person,” she explained.

Her mother agreed: “K. Leigh likes to try everything. She is not afraid. “

Like many people with Down syndrome, K. Leigh is very social. In addition to music, dance, singing and DSCBA courses, she is involved in Special Olympics, plays basketball and takes part in freestyle and backstroke swimming.

“As K. Leigh grew to be a confident and bright young woman, we knew she would be a great role model for both children and adults. We proudly hired her as an assistant teacher to work with young children on our THRIVE program, ”said Nancy LaBelle, who has been DSCBA’s director for 13 years. K. Leigh is one of six adults employed by the DSCBA with Down syndrome.

K. Leigh said she loved her job of singing with the 5 to 7 year olds and helping them do everything from learning how to tie their shoes to doing projects that require fine motor skills, like that as she was taught.

Unfortunately, COVID 19 has brought all of the organization’s personal activities to a standstill.

“We take health and safety seriously because people with Down syndrome are at higher risk of developing severe symptoms of COVID 19 as many have immunodeficiencies and other medical challenges,” LaBelle said. “We quickly closed our doors in March 2020 and put all of our existing high impact programs online to keep everyone connected and supported.”

Down Syndrome Connection offered fun online classes such as Zumba, dance, yoga, and the arts. The National Charity League, a mother-daughter utility that provides charitable services, delivered items to members’ homes so they could work on projects while teaching online, LaBelle said.

“One good thing that came out of going online is that when the geographic restrictions are gone, people from all over the country can participate,” she said. “There are some programs that we want to keep virtual because they work, but we can’t wait to program in person again and see all the smiling faces live again.”

Down Syndrome Connection was funded earlier this year by Share the Spirit, an annual vacation campaign that serves residents in need in the East Bay. Donations will help support 56 nonprofits in Contra Costa and Alameda counties. The DSCBA plans to use its Share the Spirit scholarship to offer programs during the fall and winter, including the weekly THRIVE development courses for children and adults. They will also offer weekly music therapy classes, a holiday event, support groups for parent / carers, grandparents, siblings and new parents, and Spanish language programs and services.

“Connection is the most important thing we do,” said LaBelle, adding, “We are a bridge that brings people together.”

Layne Alfrey agrees. “The Down syndrome connection is just that. It connects us – children with children, parents with parents, volunteers with volunteers. It makes people aware that our children are more like their children than they are different. The Down Syndrome Connection folks have been a lifeline to our family over the years. They have accompanied us over the years, from infancy to adulthood. I don’t know how we would have come this far without her. “


Share the mind

Share the Spirit, a vacation campaign sponsored by the Bay Area News Group, provides relief, hope, and opportunity to East Bay residents through funding for nonprofit programs in Alameda and Contra Costa counties.

How to give

Go to www.sharethespiriteastbay.org/donate or submit the coupon.

About Ellen Lewandowski

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