By Bree Nichols, The Seattle Medium
Alisha Vilela, Andrea Graham and Brooke Brown have two key things in common: They have amazing children with Down Syndrome and they had to search and search for community, not only for themselves but for their children.
Locating Down Syndrome communities and support systems isn’t as straightforward as it should be, according to the three mothers. The difficulties include the limited diversity in these spaces. Vilela’s husband is Peruvian and her child is biracial, Brown is a biracial Black woman, and Graham is white while her adopted daughter is Hispanic. Finding spaces that embrace all of the children’s identities is a challenge.
Because few Down Syndrome communities existed in the area, Vilela took the initiative to create 321 Buddy for the greater Seattle area. Now they actively share this supportive network with other nearby families.
Brown, the 2021 state Teacher of the Year, found out her child had Down Syndrome two weeks after birth in 2020. She struggled with postpartum depression while also searching the internet for help with this new journey.
“When I see Down Syndrome, a lot of times it honestly is with white kids that have Down Syndrome and I was like, what will a kid that’s Black even look like? What is our life gonna be like? I was feeling so lost.” Brown explained.
Brown said that even at Down Syndrome-focused conferences, few people of color attend, making it challenging to find relatable experiences. “I think it’s another layer you know, and so how do we find that support? To really help increase visibility, increased support, increased resources. I think there’s a lack for sure.”
Vilela, now a close friend of Brown, had a biracial baby boy with Down Syndrome around the same time. She is not a person of color but she observed the overall scarcity of Down Syndrome communities as a whole.
That was “definitely the loneliest time I’ve ever had,” she said. She searched for community while watching her son navigate numerous health complications in his early life.
Vilela and Brown met through the Down Syndrome Diagnosis Network Facebook group and forged a close friendship during that challenging time.
“I knew when I was in the hospital that something was going to change,” Vilela said. “I knew that I wanted to do whatever I could to help any other parent or caregiver feel a little less lonely during everything going on.”
With help from many, Vilela was able to start a 500-person buddy walk in 2021, on her son’s first birthday. All they received was positive feedback: “We raised like, $35,000, and people just kept saying that they needed a community and a community center and so after that I started 321 Buddy!”
The group typically holds buddy walks during October, which is Down Syndrome Awareness month, in order to celebrate, advocate and educate. Now, two years into 321 Buddy and with over $140,000 raised, they hope to open a community center.
Graham is on the board of 321 Buddy. She adopted her child, Ari, at birth through a Down Syndrome registry. After moving to Washington state, Graham was on the lookout for a community and much later found 321 Buddy when it first started. “Yes they have an extra chromosome and in my opinion and so many other people’s opinions, it makes them extra awesome. For some families the buddy walk is a way of seeing that!”
According to Vilela: “We want to have a place where as a parent of a kiddo with Down Syndrome I can go into a room with another parent of a kiddo with Down Syndrome and know they just get it.” Not only do these communities benefit those with Down Syndrome, but the families make connections, too. These connections become a source of understanding, empathy and shared experiences, fostering a supportive environment where parents can exchange insights, advice and emotional support.
Graham says 321 Buddy is a crucial step for their communities, but there is more to do, especially for families of color. “There is such an underserved spotlight really. I mean, Down Syndrome is becoming more known and we want that, but there needs to be some deeper looks, deeper dives.”
You can reach 321 Buddy at their website, where you can also read about their third annual Build A Dream luncheon planned for Jan. 15.
