Our straight student E is exceptional | Editorial chronicles

Down syndrome is the most common genetic abnormality, affecting approximately 1 in 1,000 live births in the United States. The percentages are higher when the mother is over 40 years old. The genetic condition was first identified and categorized by Dr John Langdon Down (1828-1896), a British physician in London in 1862. Then and for over a century later. , people with Down syndrome were often called mongoloids, morons, retards. or even a freak, and until the late 1970s and 1980s, a young adult with Down syndrome was more likely to be institutionalized than employed and allowed to be a productive member of society.

Fortunately, a lot has changed since then. In our small family, we have two daughters. The firstborn, Barclay, was a virtually straight student, graduating magna cum laude from Auburn University, and is now a gifted educator and mother of twins living in Gwinnett County. Her younger half-sister, Olivia, is our straight student E. E for Outstanding and Exceeding Expectations.

People with Down syndrome are each born with a little something extra. Each human being has 46 chromosomes in each cell. People with Down syndrome have 47. In the human genome, there are 23 pairs of chromosomes. In people with Down syndrome, there is additional data, a third set, on this 21st pair. Three instead of two sets on this 21st pair, hence the scientific name for this genetic abnormality being Trisomy 21. To recognize and celebrate this exception, World Trisomy 21 Day has been created and is now celebrated on 3/21 — Monday, March 21, 2022, was WDSD for this year.

Our children are rarely straight students. Standardized tests in particular are difficult. But Olivia and the other members of this circle can generally master and complete most tasks, even those that are supposed to be out of their reach, it just takes them a little longer.

A bit like the bumblebee, which physicists will tell us is flightless because their torso and body weight are simply too heavy and bulky, in proportion to their small wings and wingspan. Luckily, no one told the bumblebee it couldn’t fly.

Not much more than a toddler, at the age of 4 Olivia started equine therapy – weekly walks and rides, with trained adult walkers on either side as well as riding the horse – to help Olivia with her balance, core muscle tone and self-worth. Even now, Olivia is a bit of a “horse whisperer.” But Olivia preferred her horse Xan to sing or trotted, and in one instance, after giving the command, leapt up at an almost full gallop, laughing as she bounced solo on horseback until the walkers and I meet Xan.

Later, Olivia became interested in rock climbing and rock climbing, which due to her low muscle tone and upper body strength – something called hypotonia, present in almost all cases of trisomy 21 – she shouldn’t have been able to accomplish, yet Olivia was soon scaling 30-foot transparent face walls with ease. And even later, partly because of an extremely flexible upper and lower torso, Olivia tried yoga and light gymnastics. She has also become a very capable swimmer, with her own style of swimming which we call free fly.

But what Olivia and our children dream of most is simply to be welcomed and accepted. To have friends and peers and to be included, like any other student or child. Luckily, Olivia is now thriving at her school, the Museum School, as the end of middle school isn’t too far away and the transition to high school is looming.

Olivia loves to pretend, especially anything involving a Disney princess or villain, and she had a role in her last school play, “Beauty & the Beast, Jr.”, which became an entire highlight. his upbringing so far.

I know that being Olivia’s father has made me both a better person, a better parent, and hopefully a better grandparent. Almost daily, Olivia helps me remember what’s most important in life and make time to celebrate even the smallest victories of each day. After all, can’t we all use a little more stuff to be happy and rejoice.

We wouldn’t trade our Straight E-Student for a Rhodes Scholar, and we hope you, your family, and your circle each have an outstanding week and a happy Down Syndrome Day.

Bill Crane is a senior communications strategist who began his career in broadcasting and has worked at the state capitol and in Washington in both political parties. Contact him at [email protected]

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