“As the mom of a toddler, it was exciting to see many of the adult self-advocates navigating and participating in the convention independently. It was like seeing Evan’s future and all the amazing possibilities ahead.”
Evan Nathaniel Guess is an 11 year old, who loves to read and does well in school. He also happens to have Down syndrome. His mom, Carole Guess, shares, “Evan is a hard worker. He is independent, energetic and outgoing. He also likes superheroes, sports, photography and cooking.”
When Evan was born, Carole immediately hit the internet to do research on Down syndrome organizations. “NDSC was the one that caught my attention, and held it,” she says. “I appreciated their commitment to diversity within the Down syndrome advocacy community. It was nice to see NDSC’s definition of inclusion went beyond intellectual abilities and also meant inclusion of single parent families, families of color, and so on.”
The family’s first NDSC Convention was in 2007. They drove from Indianapolis, Indiana to Kansas City, Missouri. “I think our family was astonished to see so many families, educators, and healthcare professionals in one place. One of the biggest surprises for Carole was seeing the large number of families of color in attendance. A local affiliate member had the idea to invite the African American families to get together for fellowship and a meal. “The best part was getting a chance to share the awesomeness of our kids, dispelling some myths, educating, advocating and doing a little bragging, all at the same time.” It went so well, it has now become an annual part of the Convention!
The Guess family has made the Convention a yearly trip every year since 2007. “For Evan, it’s pretty much a family vacay where he gets to eat junk food, stay up late, hang out with his friends and dance. For the adults… it’s that, too. But, there are a number of education and healthcare professionals in our family, who have attended for the professional CEU (continuing ED) opportunities. Other family and friends who couldn’t attend give a list of topics, and then anxiously await a debriefing of any new information presented. I don’t think there is another Convention like it anywhere.”
For Carole, though, the convention is more than just information gathering. “We look forward to reconnecting with the families we have become close to over the year and catching up on everything their loved one with Down syndrome has accomplished over the year. There is always Facebook, but there is nothing like getting to hug on your extended family with whom you share so much in common!” When Carole reflects on her experience with NDSC, she sees how much this organization has taught her family. “I realized how important it is to be an active, engaged advocate for your child, regardless of their abilities. After the first Convention, I began to serve on local advocacy organizations Boards and committees. I also founded the Minority Families Down Syndrome Network (MFDSN).”
When Carole looks at her son, she sees the potential and the opportunities organizations like NDSC make possible for individuals with Down syndrome. “Just like every other child, Evan has some strengths and some challenges. There are thing he can do others his age cannot do and vice versa. If there is a definition on of a “typical” child, he is it. He just happens to have Down syndrome. And he is awesome.”
The NDSC is committed to our outreach programs. We believe that by empowering individuals and families from all demographic backgrounds, we can reshape the way people understand and experience Down syndrome.