Feature
Friends Forever
PROVIDED PHOTOS
How the Panhandle Down Syndrome Guild built a lasting community By Jonathan Baker
E
ach year, about 6,000 babies nationally are born with Down syndrome. Although the incidence is somewhat common, misperceptions remain about what Down syndrome is. For parents who’ve just received a diagnosis that they’re going to birth a Down syndrome baby, the news can seem by turns scary and daunting. And yet, parents of kids with Down syndrome say their lives have been enriched in countless ways. One local organization, the Panhandle Down Syndrome Guild, is on a mission to educate new parents, while building a strong and lasting community around their shared experiences.
Growing Strong
Vicki Gordon’s son, Philip, was born with Down syndrome just before Christmas 2000. When her son was born, Gordon had no idea that he would have Down syndrome. “I was very shocked,” she recalls. “I was 31 years old, and I just didn’t think that would happen to a 31-year-old. But it did.” Grappling with what to do, Gordon quickly turned to ECI (Early Childhood Intervention) for help – a decision that would eventually, through a twisting path, lead to the creation of the Panhandle Down Syndrome Guild. Gordon, the current President of the Panhandle Down Syndrome Guild, has been with the organization since its beginning in 2002. Gordon says it took a full year to “wrap her brain” around the fact that she was now mother to a child with Down syndrome. She began to yearn for some community, some other folks to talk to who would understand her experience. In those early days, Gordon had “a wonderful case manager” at ECI named Jennifer Womack, who helped a great deal. However, because of HIPAA laws, the ECI couldn’t give Gordon any names of other families in the area that had Down syndrome children. Because there was no support group in the Panhandle, Gordon decided to write a letter and send it out widely. “I just said, ‘Hi, my name is Vicki. I have a son named Philip with Down
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syndrome, and I would love to talk to other parents.’” And Jennifer Womack, “being as wonderful as she is, made copies of that letter. She gave it to any of her families that it would pertain to.” Womack also delivered copies of Gordon’s letter to other caseworkers in the area, to pass along to their families. Soon enough, Gordon began to receive responses to her letter from other families in the region. The result was the first meeting of what would become the Panhandle Down Syndrome Guild, held at Southwest Baptist Church on April 15, 2002. “We had about five families come at that point,” remembers Gordon. “But it was wonderful.” Over the ensuing 19 years, the PDSG continued to grow – mostly from word of mouth, and through the visibility of the group’s various events, most prominently the yearly “Buddy Walk.” Established by the National Down Syndrome Society in 1995, the Buddy Walk is now the major national event for people with Down syndrome, a yearly occurrence that helps to raise awareness, while giving friends, family members and advocates a chance to gather and celebrate those in their lives with Down syndrome. “This year,” says Gordon, “we couldn’t do a walk because of COVID. So we did the ‘Amazing Buddy Race,’ a scavenger hunt around Amarillo and Canyon.” The Buddy Walk is just one example of the types of events that have resulted in PDSG growing its membership over the past couple of decades. This year, as with pretty much every other endeavor, the pandemic has made the work of the PDSG more difficult. “When the pandemic started,” says Gordon, “literally like two days before we went into shutdown mode, we’d sent off our sponsor packets for our Buddy Walk. And then of course, because like so many people we didn’t think this pandemic was going to be much, we were like, ‘Oh, by the time October rolls around, when we have our walk, this will all be over, this will be water under the bridge.’” Of course, that prediction proved inaccurate. In May, the PDSG leadership held a Zoom meeting to discuss how to proceed. “We’d
