FRIENDS FOREVER

Friends Forever How the Panhandle Down Syndrome Guild built a lasting community

By Jonathan Baker

PROVIDED PHOTOS

Each 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 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

already had some sponsors sending in their sponsorship money. We went back and forth and back and forth. [Ultimately], because our kids have suppressed immune systems, [we decided] it wouldn’t be a good thing for us to host an event for our kids. So that’s why we did the scavenger hunt instead.”

Growing Strong

As Gordon recounts, there “was clearly a learning curve” for the group during the early years. But the incipient group felt a sense of purpose, so they went all out – even taking on the task of hosting the Buddy Walk during that first year, an enormous endeavor for such a young organization. Gordon estimates that the initial PDSG Buddy Walk attracted “maybe 400 people” – not too shabby for a first-year event. But that was just the beginning. Like the organization itself, the PDSG’s Buddy Walk has grown year by year, now drawing upwards of 4,000 Panhandle residents (with the exception of COVID-impacted 2020, of course).

However, the Panhandle Down Syndrome Guild isn’t totally about fun and games; there’s a serious side to the organization’s work as well. Much of that work has to do with addressing the needs and fears of new Down syndrome parents, or parents who’ve just received a Down syndrome diagnosis.

“When I had Philip,” Gordon reiterates, “I did not know that he had Down syndrome. I was given a tiny packet of information that was very antiquated, very gloom and doom stuff. I mean, if you weren’t already sad that your baby had Down syndrome, [the packet] listed all the other things that could go wrong – and there were no pictures, no nothing.” For this reason, one of the first projects the PDSG decided upon during that initial April 15 meeting was a plan to present better materials to the hospitals, newly written and more attractive packages to give out to families.

Nineteen years later, the PDSG gives out their “parent packs” to every hospital in the Panhandle, as well as obstetricians’ offices and other relevant facilities. Each parent pack consists of a notebook featuring personal stories of local families, along with contact information for those families, and lots of pictures of the local Down syndrome community. “I mean,” says Gordon, “certainly there’s some [difficult] information associated with Downs, but there’s [also] a lot of positivity.” Along with the parent packs, new Down

Vicki Gordon: Advice for New Down Syndrome Parents

“I tell new parents that it’s OK to mourn, it’s OK to be sad over the diagnosis initially. Nobody wants their child to have ‘something wrong’ with them. We all want to come home from the hospital with that healthy, ‘perfect’ child. But you’ll get over that initial shock and grieving period, which is very natural, and which so many parents feel guilty about feeling. I mean, I felt guilty. I was sad that Philip had Down syndrome. But I got over that hump, and you know what? I would not change my path with having a child with Down syndrome for anything. Philip has just made me a better person. He’s made my oldest son, Gentry, a better person. I have so many life experiences that I would never have had in a million years had I not had Philip. And Philip is his own unique individual, just as my other son Gentry is, but in a different way. Philip adds so much to our family. I wouldn’t take that away for anything.”

Common Misconceptions

One important element of the work performed by the PDSG is to educate the public about the realities of Down syndrome. “I think,” says Gordon, “people [tend to] lump everybody with Down syndrome into one category, like they’re all kind of the same. They say, ‘Oh, OK, I can tell you have Down syndrome so you’re probably always happy.’ Or they put people with Down syndrome in a box as far as their intelligence. But, oh my goodness, people with Down syndrome are just as different as everybody else is! Everyone with Down syndrome has their own talents and strengths and weaknesses.” As examples, Gordon names several locals with Down syndrome: one writes poetry, another is an avid reader, another just graduated from WT, another is in her high school marching band, and yet another was a kicker on the Bushland football team. The list goes on. “I think so many times as a society,” Gordon notes, “we put limitations on people – not just people with Down syndrome, but people in general. And then we have to overcome those limitations. We have to push our kids to be the best they can be.”

syndrome parents also receive a book: “Understanding Babies with Down Syndrome.”

Beyond that, the PDSG has supplied the local libraries with current information about Down syndrome. “Because again,” recalls Gordon, “the first thing I did back in 2000 was go to the local library, and they had some books on Down syndrome that were written in like 1974, 1982. Scary information. I mean the life expectancy of somebody with Down syndrome in 1950 was like 7, whereas today the life expectancy is like 65. So if you read [those older books] like I did, you just think, ‘Oh my goodness.’” Today, through the work of Gordon and her volunteer colleagues, Panhandle libraries are stocked with up-to-date information about Down syndrome.

That word, “volunteer,” is worth noting. “We don’t have any paid staff,” says Gordon. “We’re just a bunch of parents, and grandparents as well.” In addition to these family members, the PDSG receives help from locals who have hearts for service, “great community people who come to our events, come to our meetings, and help out, just because they have fallen in love with our families, our kids and adults with Down syndrome.”

A Bright Future

Today, the Panhandle Down Syndrome Guild boasts a membership upwards of 200 families. “We have families throughout the Panhandles, not only of Texas, but we’ve got some Oklahoma, and we’ve got some New Mexico families.” Gordon adds, “Some of the more active families live in the little communities outside of Amarillo, where their child or adult with Down syndrome may be the only person in that community that has Down syndrome, or may be one of just a few. So people in those smaller communities seem to be eager for that camaraderie and that acceptance we all get through the group.”

Furthermore, the PDSG is always looking for new members. “In nonpandemic times,” says Gordon, “we would love to have people come and volunteer and help when we have meetings and things like that. We know this pandemic isn’t going to last forever, and we certainly always need lots of help once the Buddy Walk rolls around. But [in the meantime], people can just educate themselves about what Down syndrome is, because there’s just a lot of misinformation out there about Down syndrome.”