World Down Syndrome Day is recognized on March 21st; the date, 3/21, signifies the three copies of the 21st chromosome present in Trisomy 21, or Down syndrome. WDSD is an international celebration of individuals with Down syndrome and their families, and it’s developed into quite an important day of advocacy.
In the weeks leading up to WDSD, it’s not difficult to find information about Down syndrome. Social media posts that countdown to 3/21 with daily facts, special community events, and even local government proclamations are not uncommon in March.
While these advocacy actions are certainly impactful, they tend to be fairly high-level and don’t always allow someone who isn’t connected to the Down syndrome community to really grasp what Down syndrome is…or isn’t.
My oldest son, Alex, is 17, so we’ve had years and years of experience in advocating for him. It took me a long time to become comfortable in my role of advocate, but once I realized that advocacy is based in storytelling and making connections, it became easier.
So yes, read up on all the facts about Down syndrome, rock your silly socks, and perhaps attend a gathering in your community on 3/21 to learn about the significance of this day. But while you’re doing that, I hope you’ll also keep these things about Alex in mind:
- Alex needs more advocates in our community, and I’m willing to bet this is true for all individuals with Down syndrome. They need people outside of their families who are willing to diversify their places of work and worship, who encourage their children to be true friends to their peers with Down syndrome, and who stand up to inequities for kids with disabilities in their school districts and in the workforce.
- Like any teenager, Alex wants to fit in and be accepted by his peers. He longs for true friends who will invite him out on the weekends and not just say hi and give fist bumps in the halls at school. Being Alex’s friend has its perks: he is one of the most loyal people I know. Once you’re his friend, you are truly part of his life forever. Who doesn’t need a friend like that?
- Alex wants to be treated like a teenager, not like a five-year-old. He notices when you talk down to him. If you engage him like you would another 17 year old, you would find that he has a terrific sense of humor and loves to talk about sports. He is a great conversationalist, but many people miss out on that because they don’t think he is capable of carrying on a casual chat.
- Alex doesn’t want special treatment. He wants equitable treatment, and that is what I focus my advocacy on as he gets older. He wants you to see him for who he is, not who he isn’t, and he wants to pursue his dreams and live an independent life.
- Inclusion matters. How inclusive are your schools, your kids’ activities, your churches, your favorite restaurants or places of business? Here’s an easy way to tell: if you don’t see people with Down syndrome at any of these places, or if they are consistently segregated into other parts of the school/church/workplace, it’s not inclusive. We must begin speaking up and thinking outside of the box so that people with Down syndrome have more opportunities in their lives.
- Alex loves WWE, KitKats, Kroger chocolate milk, most sports, his dogs, The Price Is Right, his family, and his friends. He has the most school spirit of anyone I know, and he loves it when all of his favorite people are together in one place. Of course, none of this really has anything to do with WDSD, but he’s a great kid and I wanted you to know him a little better after reading all of this.
As an advocate, it’s up to me to ensure that Alex gets to live the life he wants, that he gets to chase the dreams that he envisions. As we celebrate World Down Syndrome Day, I hope you’ll join me in those efforts.
There just might be a KitKat in it for you…if Alex will share.