Change the conversation about Down syndrome this month.
October is Down Syndrome Awareness Month, which makes my life right now a little overwhelming, but also very rewarding. As the mother of a 30-year-old son with Down syndrome and executive director of the Down Syndrome Association of Jacksonville, every day is an awareness day for me. But for our community and nation at large, October gives us the opportunity to all speak with a common voice, and that raises the volume on our important message. What a platform!
I’ll never forget the messages I first heard about Down syndrome. In the hospital with my precious newborn, my husband and I were handed medical information that was outdated and scant on hope. We heard chatter about “institutions,” “life expectancy,” and, yes, even the word “Mongoloid.” We left that hospital with the message that we could take our baby home and love him, but beyond that, who knew? We were on our own.
As new parents, we were desperate to learn more, and in time we found other parents who shared our zeal. Together, we formed the Down Syndrome Association of Jacksonville, and in our 28 years, we’ve gathered new information and forged new opportunities. Our biggest day to advocate, educate and raise funds is coming up soon: The 15th Annual Buddy Walk will happen on the beach on Nov. 4. We’re expecting about 4,000 people to be involved, exposing attendees to Down syndrome in a celebratory fashion. The money we raise helps fund physical, speech and occupational therapies, in addition to our new paid internship program that aims to help people with Down syndrome build office skills into their resumes.
We left that hospital with the message that we could take our baby home and love him, but beyond that, who knew? We were on our own.
How about you? What if you don’t live in Jacksonville? If your community doesn’t have a Buddy Walk to enjoy, you can still celebrate Down Syndrome Awareness Month. Consider the power of social media. It’s free, and it’s impactful. What does Down syndrome mean in your life? Tell people. This can be so much more meaningful than facts or statistics. You may never know how much sharing your personal story will touch people.
We’re proud to be changing the conversation about life with Down syndrome. Specifically, our agency now provides updated information for distribution at Jacksonville area hospitals, so that parents of newborns with Down syndrome are given a more truthful, hopeful message, and they’re immediately welcomed into our community of active support.
The odds were against my son, Nicholas, ever living on his own, having a job, or having a girlfriend — but now he has all three. Life may not look the same for him as it does for his brothers, but it’s his and we couldn’t be more proud.
So get onto social media, go to a Buddy Walk, push for early therapeutic interventions and advocate for job opportunities for our loved ones with Down syndrome. This October, and all throughout the year.
Debbie Revels is executive director of the Down Syndrome Association of Jacksonville and an ABLE United partner.