When I first found out that October is Down Syndrome Awareness Month, my daughter Georgia was about eight months old. In those short eight months we crammed a lot of big experiences into our lives. Not only were my husband and I thrust into new parenthood with the birth of our first baby, we were also launched into the world of special needs.
Georgia was born with Down syndrome and a congenital heart defect in December of 2006. From her initial eight days in the NICU, to her diagnosis of Failure to Thrive and subsequent feeding therapy, to a particularly nasty bout of RSV, and the culminating surgery to repair her heart when she was five months old, we spent a lot of time in those early months in and out of the hospital. (For giggles during this time, my husband also finished and defended his dissertation, and we moved just a month before Georgia’s operation from Connecticut to Vermont.) Those months were alternately busy, scary, and exciting, and thankfully, I kept a blog throughout it all.
Blogging introduced me to other people in the Down syndrome community from all around the world. The friends I made while blogging were and are invaluable to my family and me. In addition to being a place for socializing and exchanging information, ideas, and stories though, blogging became a platform we could utilize to raise awareness about Down syndrome.
Most of us in the DS community were already using our blogs to highlight our children’s triumphs, but our blogs also became a place to talk about the unique challenges our children and families face in a society that has historically been designed for typical and able-bodied people. Early on I began thinking of the impact we could make if we put our voices together in a concerted effort to reach (and teach) more broadly.
It was just a couple days before October in 2007 that I learned it was Down Syndrome Awareness Month, and I liked the symmetry of the numbers. There are thirty-one days in October, and Down syndrome is a result of an extra copy of the twenty-first chromosome. On a whim I decided to challenge the blogging community to write in their blogs for thirty-one days in recognition of the month.
Many people in the community had children or other family members with DS, but not all of them; neither did all of our readers have an immediate connection to anyone with special needs, and I felt there was potential to reach beyond our relatively small circle.
The only rules in the challenge were that you had to write a blog post for each of the thirty-one days in October. (It didn’t have to be about Down syndrome, although I encouraged people to write at least one post about it.) I also requested that bloggers use a badge I created that linked back to the original challenge post so people would know what we were doing and why. The response was overwhelmingly positive and in the first year we had over one hundred participants from all around the US and the world.
After several years, when I stopped blogging as often, I handed off the 31 for 21 baton to Michelle Beausoleil Helferich, a great friend and Down syndrome advocate (as well as a prolific and popular blogger). I’m happy to say the 31 for 21 Challenge has been an annual event since its inception and is currently in its tenth year.
Georgia will be ten years old in December and she has come such a long way. She is a funny and bright girl who has brought great happiness to our lives. I don’t know if there is a “typical” special needs journeys, but ours has not been common to the experiences of others we know. Georgia faces some additional hurdles because besides DS she also has a diagnosis of autism, and just this year, we learned she has Juvenile Idiopathic Arthritis. Each of these conditions present unique challenges.
As we have moved through the years, we’ve learned to accommodate and grow rather than resist. In the beginning, I was the mother and advocate who believed that capital-I Inclusion was the best and only way to educate our children. As my daughter grew up and began to show us what she needed, however, I had to learn to listen not to my ideals, but to what she was telling us very clearly.
We had an incredibly smart, but unhappy and anxious child on our hands who began uncharacteristically hating school and learning. We made the tough and admittedly humbling decision to look into alternative schooling options when the public school setting began negatively affecting mostly Georgia’s—but also our entire family’s—mental health and sense of well-being. Two and a half years ago after a number of rocky years in school, Georgia began attending a non-public school for children with autism and communication disorders. It is the best thing we could have done for her in regards to school. She is happy and thriving.
I used to highly value the slogan new parents of kids with Down syndrome so often hear that our children are “More Alike Than Different.” Eventually though, that phrase started to bother me. Yes, my daughter is more alike people who don’t have Down syndrome or Autism or Juvenile Arthritis than not, indeed we are ALL more alike than different, each of us human beings with all manner of ideas and concerns and feelings and potential. Each of us also differs from one another in some great and small ways, too. Difference is not a bad thing. Difference is what pushes us. It’s how we grow. Isn’t difference what makes our world so interesting? Different isn’t bad. It’s just different. I propose a new slogan: “A Little Different, And That’s Okay.” Or maybe just, “Isn’t Difference Wonderful?"
About the Author Tricia lives in Baltimore by way of New England with her husband and two children. She kept the blog Unringing the Bell for fifteen years and is a former president of the Chesapeake Down Syndrome Parent Group. Currently she works as a freelance writer while pursuing her MFA in Creative Writing and Publishing.