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 there were no organizations down south that provided direct services for children, like her, who had Down syndrome.
Her mother Layne discovered a robust community in the East Bay supporting families with a child with Down syndrome and quickly joined a young mothers’ support group.
“They provided us with a wealth of information and guidance, a place to talk, share ideas and best practices. We gained a real sense of security knowing we were part of a community and weren’t walking alone,” Layne Alfrey said.
As K. Leigh grew, the Down Syndrome Connection of the Bay Area (DSCBA), located in Danville, provided help navigating the developmental delays associated with the genetic disorder, including exercises to boost low muscle tone, classes to improve gross and fine motor skills, and referral to a speech therapist. K. Leigh went to public school and was in full inclusion classes from kindergarten through high school. In addition, she went to weekly after-school classes (now called THRIVE) with her peers.
In fourth grade, K. Leigh brought home a permission slip from school and told her parents that she wanted to learn to play the clarinet. Ever since, she’s been studying with a teacher, first in person and recently over Zoom. K. Leigh loves playing so much that her mother never has to tell her to practice. She overcame her fears and performed solos at holiday concerts. In high school she was invited to put on a green and yellow uniform and play her clarinet in the San Ramon Valley High School marching band during home football games.
At 36, K. Leigh’s a bright-eyed, happy, full-of-life, confident person. “I’m the bravest person,” she declared.
Her mother agreed: “K. Leigh likes to try everything. She has no fear.”
Like many people with Down syndrome, K. Leigh is very social. In addition to music, dancing, singing and taking DSCBA classes, she’s involved with Special Olympics, playing basketball, and competing in free-style and backstroke swimming events.
“Watching K. Leigh grow into a confident and bright young woman, we knew she would be a great role model for both children and adults. We proudly hired her to be an assistant teacher to work with young children in our THRIVE program,” said Nancy LaBelle, who has been executive director of the DSCBA for the past 13 years. K. Leigh is one of six adults employed at the DSCBA who have Down syndrome.
K. Leigh said she loved her work singing with the 5- to 7-year-olds and helping them do everything from learning how to tie their shoes to completing projects needing fine motor skills, just as she was taught.
Unfortunately, COVID 19 brought all the organization’s in-person activities to a screeching halt.
“We take health and safety seriously because people with Down syndrome are more at risk to develop severe symptoms from COVID 19 due to many having immune deficiencies and other medical challenges,” LaBelle said. “We quickly closed our doors in March 2020 and pivoted all of our existing impactful programming online to keep everyone connected and supported.”
Down Syndrome Connection offered fun online classes such as Zumba, dance, yoga and art. The National Charity League, a mother-daughter service program that provides charitable services, delivered items to members homes so they could work on projects during online classes, LaBelle said.
“One good thing that came from going online is that with geographical limitations gone, people from all over the country can participate,” she said. “There are some programs we plan to keep virtual because they work, but we can’t wait to get back to in person programming and see all the smiling faces live again.”
Down Syndrome Connection received funding this year from Share the Spirit, an annual holiday campaign that serves residents in need in the East Bay. Donations will help support 56 nonprofit agencies in Contra Costa and Alameda counties. DSCBA plans to use its Share the Spirit grant to provide programming throughout the Fall and Winter including the weekly developmental THRIVE classes for children and adults. They will also provide weekly music therapy classes, a holiday event, support groups for parents/caregivers, grandparents, siblings and new parents, as well as Spanish language programming and services.
“Connection is the most important thing we do,” said LaBelle, adding, “We are a bridge bringing people together.”
Layne Alfrey agrees. “The Down Syndrome Connection is just that. It connects us — children to children, parents to parents, volunteers to volunteers. It makes people aware that our kids are more like their kids than they are different. The people at the Down Syndrome Connection have been a lifeline to our family over the years. They’ve been with us spanning the years from infancy to adulthood. I don’t know how we would have come this far without them.”
