Down syndrome is the most common genetic abnormality, impacting roughly 1 out of every 1000 live births in the United States. The percentages are higher when the mother is over the age of 40. The genetic disorder was first identified and categorized by Dr. John Langdon Down (1828-1896), a British physician in London in 1862. Then and for more than a century later, people with Down syndrome were often called Mongoloid, moron, retarded...or even freak, and until the late 1970s and 80's a young adult with Down syndrome was more likely to be institutionalized than employed and allowed to be a productive member of society.
Thankfully, since then, much has changed. In our small family, we have two daughters. Firstborn, Barclay, was a practically straight-A student, who graduated Magna Cum Laude from Auburn University, and is now a gifted educator and mother of twin boys living in Gwinnett County. Her younger half-sister, Olivia, is our Straight E student. E for Exceptional, and exceeding expectations.
People with Down syndrome are each born with a little something Extra. Every human has 46 chromosomes in each cell. People with Down syndrome have 47. On the human genome, there are 23 pairs of chromosomes. In people with Down syndrome, there is extra data, a third set, on that 21st pair. Three instead of two sets on that 21st pair, hence the scientific name for this genetic abnormality being Trisomy 21. To recognize as well as celebrate that exception, World Down Syndrome Day was created and is now celebrated on 3/21. Monday, March 21, 2022, is WDSD for this year.
Our kids are rarely straight-A students. Standardized tests in particular are challenging. But Olivia and others in this circle typically can master and accomplish most tasks, even those supposedly beyond their reach, it just takes them a bit more time.
Not unlike the bumblebee, which physicists will tell us is unable to fly, as their torso and body weight is simply too much weight and bulk, in proportion to their small wings and wingspan. Fortunately, though, no one told the bumblebee that they can’t fly.
Not much more than a toddler, at the age of 4 Olivia began taking Equine Therapy, weekly horseback walks and rides, with trained adult walkers on each side as well as leading the horse, to assist Olivia with her balance, core muscle tone as well as her own self-worth. Even now Olivia is a bit of a 'horse whisperer.' But Olivia preferred that her horse Xan cantor or trot, and in one instance after giving the command, bounded away at a near-full gallop, giggling as she bounced solo on horseback until the horse walkers and I ran Xan down.
Later, Olivia took an interest in rock and wall climbing, which due to her low muscle tone and upper body strength, something called hypotonia, present in almost all with Down syndrome, she should not have been able to accomplish, and yet Olivia was soon scaling 30-foot sheer face walls with ease. And still later, in part due to an extremely limber upper and lower torso, Olivia gave Yoga and light gymnastics a try. She also became a very able swimmer, with her own unique stroke which we refer to as the free-breaster-fly.
But what Olivia and our kids crave most is simply being welcome and accepted. To have friends and peers and to be included, just like any other student or child. Thankfully, Olivia is now thriving at her school, the Museum School, as an end to middle school is not too far ahead and the transition to high school looms.
Olivia loves to pretend, particularly most anything involving a Disney Princess, or villain, and she played a role in her most recent school play, "Beauty & the Beast, Jr.," which has become a highlight of her entire education thus far.
I do know this, being Olivia's Dad has made me both a better person, a better parent and hopefully, a better grandparent. Almost daily Olivia helps to remind me of what is most important in life and to take the time to celebrate even the smallest victories of each day. After all, can't we all use a few more things to be happy and to get excited about.
We would not trade our Straight E-Student for a Rhodes Scholar, and we hope that you and your family and circle each have an exceptional week and Happy Down Syndrome Day.
