Bookmark and Share

Finding support in a time of need

By Angela Hill

ahill@bayareanewsgroup.Bcom

Moments after the birth of her son, Sam, in 2012, Cathleen Small was alarmed when a nurse swept himfromher sight without a word. A woman in a lab coat eventually returned and flatly told Small that Sam likely had Down syndrome, describing some of the technical aspects of the diagnosis but providing little in the way of “where you go from here” information.

Small and her husband knew nothing about the genetic disorder and had no clue where to turn. They were merely handed a scrap of paper with a web address on their way out of the East Bay hospital.

“Medically, my hat goes off to the hospital for their wonderful care of Sam,” Small said. “But emotionally, it could have been much better. This is big news, and you need support.”

Left to search for that support on her own, she came across the Down Syndrome

Sam Small, 5, who was diagnosed with Down Syndrome at birth, works on his homework with his mother, Cathleen Small.

DAN HONDA — STAFF PHOTOGRAPHER


Connection of the Bay Area. She contacted the Danvillebased group andwas immediately greeted with a warm “Congratulations!” on the birth of her baby, and invited to a new-parents group. With a 3-week-old Sam in tow, she attended her first meeting and felt a wave of calm wash over her.

“The other parents were talking about some of the same issues I was already experiencing with my toddler, Theo, who does not have Down syndrome, and I thought, ‘Well, it’ll be different, but not that different. Life will go on just fine,’ ” she said in a recent interview, as a smiling, rambunctious Sam — now 5 — played on the sofa of their Clayton home with the family pug, Zoe. “That was the first moment I felt everything would be OK.”

Down Syndrome Connection of the Bay Area has received funding this year from Share the Spirit, an annual holiday campaign that serves needy residents in the East Bay. The grant is administered by the Contra Costa Crisis Center, and donations support programs of more than 40 nonprofit agencies in Contra Costa and Alameda counties.

Since 1998, the DSCBA has been offering valuable connections for Bay Area children and adults with Down syndrome and their families through age-appropriate development classes, group functions, music therapy, referrals, advocacy, support meetings and more that will take them through their entire lives, said Amy Parham, DSCBA’s public relations manager.

“Some of our adult groups have been together almost 20 years, and our oldest member is 64 now,” Parham says. “The focus is lifelong, allowing children and adults to move together with their peers through these classes while supporting everyone in the family, from parents and siblings to grandparents and more.”

Indeed, the whole Small family attends groups and events such as the annual Step Up Walk & Holiday Party. Sam’s big brother, Theo, 9, even thinks it’s “really cool” his brother has Down. “It’s a rare thing, and I like learning how he develops differently than other kids in his class,” Theo said.

Sam attended DSCBA’s Early Connections classes when he was just a baby and is now in the schoolage development class. “Once a week, they do art projects, sometimes a little cooking project, read a story,” Small said. “The classes are designed to be developmentally appropriate. So, for school-age kids, they’re teaching things like turn taking, waiting in line.

“He’s in mainstream kindergarten, too, but I also like him to be around his peers with Down syndrome. It’s the best of both worlds.”

Down syndrome occurs when someone has a full or partial extra copy of chromosome 21. This additional genetic material alters the course of development and causes characteristics such as low muscle tone, small stature and developmental issues.

For parents, the journey all begins with the diagnosis, whether pre-natal or after birth. And Small’s less-than-happy experience upon learning her baby had Down prompted her to participate in DSCBA’s medical outreach program. Now serving as the program’s coordinator, she regularly visits birthing centers in Bay Area hospitals, providing information packets and training for medical professionals on the best ways to communicate the Down diagnosis.

“I did an informal survey of parents throughout the state about their experiences at diagnosis,” Small said. “In the Bay Area alone, 54 percent said they’d had a negative experience with the diagnosis, or could have used more information. That’s just not right.”

Parham agrees. “As a parent of a 13-year-old daughter with Down syndrome and autism, I know there’s a big learning curve — learning a new language, processing information, especially if you’re not expecting it,” Parham said. “If that information can be delivered with up-to-date data and with compassion, it can set the tone for someone’s life.” Contact Angela Hill at 510208- 6493.

Sam Small, 5, who was diagnosed with Down Syndrome at birth, waits to go outside at his family’s Clayton home.

PHOTOS BY DAN HONDA — STAFF PHOTOGRAPHER

Cathleen Small reached out to the Down Syndrome Connection after the birth of her son, Sam, for support.

Sam attends a mainstream kindergarten, as well as a development class with the Down Syndrome Connection.

Bookmark and Share