World Down Syndrome Day: Rock Those Socks!
Not Just A Day To Wear Awesome Socks
Why Raise Awareness About Down Syndrome?
I first learned about Down Syndrome when I was in Grade 10. I was living in Alberta at the time, and I'd signed up for a course called "Special Projects." As I recall, I had to take a Special Projects course as part of my graduation requirements. Anyhow, I ended up working with a young man named Haydn, who had Down Syndrome, and as it turned out, my mother, who was a nurse, knew the family. Because I really didn't know a whole lot about Down Syndrome at the time, I was able to tap into my mother's knowledge as a resource.
Haydn was largely nonverbal, but that didn't mean you couldn't understand the joy he so often felt at the very simplest of things. His face was an open book of emotions, and in retrospect, I remember just being so in awe of the fact that he was just so open with his delight with the world. Sure, he had his moments of frustration - who doesn't? - but for someone who would often struggle with things until he could successfully do them himself, there was a joy there that was just so palpable. He was, as I recall, very free with hugs and high fives, and when my semester of working with him came to an end, I remember feeling sad, like I was losing something very dear that I hadn't even realized had become so important.
Down Syndrome is "caused by extra genetic material in chromosome 21. This can be due to a process called nondisjunction, in which genetic materials fail to separate during a crucial part of the formation of gametes, resulting in an extra chromosome (called trisomy 21)." According to the World Health Organization (WHO), Down Syndrome is estimated to impact 1 in 1,000 to 1 in 1,100 in live births globally. Three to five thousand children are born with it and it's estimated that a quarter of a million families in the United States are affected by Down Syndrome.
As might be expected, those with Down Syndrome share certain characteristics, including decreased muscle tone, a flat face, upward slanting eyes, ears that are irregularly shaped, hyperflexibility, and a large tongue relative to the size of the mouth, for instance. Those with Down Syndrome might also have other conditions, such as Alzheimer's Disease, leukemia, and heart disease.
As of right now, there is no known cause for Down Syndrome, though it's believed that the mother's age might have something to do with the development of trisomy 21. According to the Mayo Clinic, only some of the cases of Down Syndrome can be traced back to either parent as far as genetic lineage goes.
People living with Down Syndrome can enjoy an independent lifestyle, whether they live on their own or with supportive roommates or community supports that come in to help out. Many have jobs and are active in their communities, and they bring a beautiful depth to our human experience.
Those that work with individuals with Down Syndrome also need to be held up and recognized as well. While there is a wide range of symptoms for those with Down Syndrome, it should be recognized that there is a great deal of patience needed in working with these unique individuals. Those who work with Down Syndrome individuals or anyone with special needs, for that matter, should be commended for their unending kindness, respect for the level of each person's abilities, and their ongoing support. It is through the patience and encouragement of these workers - whether they are educators, support workers, or hospital staff, among others - that these people living with Down Syndrome are able to discover their successes and their independence and go on to thrive.
Sure, there are so many of us that are enjoying each other's crazy socks on March 21, and there continue to be conversations about how we can support those who are living with Down Syndrome. Let's continue that conversation and continue to discover ways we can help those with Down Syndrome live their best lives. Let's learn how we can best support those working with those with Down Syndrome and continue to help this valuable community of individuals - workers, those who employ those with Down Syndrome, and those with Down Syndrome themselves - thrive.