"I'm not telling you that it is going to be easy. I am telling you that it is going to be worth it," said Art Williams, father of a child with Down syndrome.
Thursday, March 21st is World Down Syndrome Day. WDSD is a global celebration and day of recognition and awareness for the children and adults, as well as their families and friends living in the world of Down Syndrome. Activities and social media awareness efforts will continue worldwide throughout the week.
English physician Dr. John Langdon Down, first identified what he is perceived as a distinct mental health diagnosis in 1862. It was not until early 1959 that French pediatrician and early geneticist, Dr. Jerome Lejeune along with colleague Martha Gautier, discovered that Down syndrome patients carried an additional chromosome on their 21st pair of 23 chromosomes. This gave us the name Trisomy 21, and the genetic marker for Down syndrome, which remains the world's most common genetic abnormality at birth, typically 8 out of every 1000 live births in the United States.
Among the most unfortunate aspect which readily comes to mind about the world of Down syndrome, and spending time with infants, children and adults with this genetic abnormality, is that the name of the discovering physician was not Up.
My youngest daughter is a pre-teen with Down syndrome. Whenever I pick her up at the end of a long school day, she still runs and practically jumps into my arms. This welcome is followed by a long hug and inquiry about how my day has been. As we walk to the car, typically hand in hand...she shares the measure of her day, its brief high and sometimes low points, and we plan the rest of our afternoon or evening. Though casting no aspersions, this simply would not happen with a typical pre-teen, boy or girl.
Her general kindness and treatment of others routinely brings joy. On a recent grocery trip, she noted the customer ahead of us, a nurse, had apparently had a particularly challenging and long shift. Olivia instinctively stroked her lower back, told her things would get better, and then began to unload her buggy, quickly moving to the end of the same line to bag her order and place it in her cart.
Olivia is 11, she has never been trained nor worked in a grocery store, though she regularly visits with her mother, step-father or myself. The nurse was over-whelmed with gratitude, and though she had just previously paid forward a portion of the order of the customer preceding her, she reached back into her purse and handed Olivia two crisp dollar bills and said, "Pick out something fun, just for you."
It was $2 dollars, generously given, and Olivia's face lit up like a Christmas tree. We didn't make it home before the reward had been purposed and two reward trinkets made the ride home us. I worked for nearly 9 years in the grocery business, during high school and college, and I can't remember how many thousand customers who I helped bag or carry groceries out to their car...but I can't remember a single exchange that felt quite like this one.
Our children are not seeking special treatment, a parade or the level of financial support we rightly raise to fight cancer, diabetes or many other chronic health conditions. What they seek, and we advocate on their behalf is pretty simple. They want acceptance, inclusion, friendship, independence and a life largely being treated just like everyone else. They may work years to perfect simple tasks which their own brain can trip them up on. But more than the joy of mastering that skill, they bask in the glow of friendship, consideration and love from others.
If you have occasion to interact with someone of special needs this week, perhaps realize for a moment how much they prefer that you treat them normally, that you speak to, include and embrace their presence in your community, workplace or place of worship. And if you make that choice, let me know how you feel, as well as the smile which you most likely receive as instant payment, or perhaps a simple hug which greatly improves your day. I can’t promise that every inter-action will bring joy or perfection, but I can guarantee that over-time you will be the better for those inter-actions. Happy World Down Syndrome Day!