My youngest son, Jonny, has a super-power known as ‘Down syndrome’. As such, I look forward to every March 21st so I can celebrate his abilities. That is because March 21st is World Down Syndrome Day.
Here is one of Jonny’s favourite dance moves (in this case, done on a beach; he will dance anywhere)…
Why March 21st?
To answer this question requires a bit of understanding of the underlying cause of Down syndrome. It is usually the result of a person having trisomy 21, which means three copies of chromosome #21. Hence, Down syndrome Day is on the 21st day of the 3rd month. Those of us lacking this super-power only have two copies of chromosome 21.
History
Dr. John Langdon Down (1828-1896) was a British physician and the first to formally describe the features associated with Down syndrome. The name of the syndrome is in honour of his work.
Dr. Jérôme Jean Louis Marie Lejeune (1926-1994) was a pediatric geneticist who discovered the genetic cause of Down syndrome.
Types of Down Syndrome
Trisomy 21: The vast majority of people with Down syndrome have three copies of chromosome 21 in all their cells. However, Down syndrome can manifest in two other ways…
Translocation Down syndrome: This occurs when an extra chromosome 21 or part thereof ends up attached to another chromosome. Technically, there are not three separate copies of the 21st chromosome, but there are three copies of all or many of the genes encoded by this chromosome.
Mosaic Down syndrome: Some but not all of the cells in the body have three copies of the 21st chromosome.
Some Common Features of Down Syndrome
Eyes that are on a slant and that tend to be almond-shaped
Short neck
Relatively small hands and feet
Relatively shorter in height
Poor muscle tone
Loose joints
Tongues that tend to be thick and stick out of the mouth
Some have a ‘palmar crease’, which is a single line across the palm of the hand
Small pinky fingers that are sometimes curved
Developmental delays
Cognitive challenges
There are wide spectrums of abilities and disabilities associated with Down syndrome. Some have many special needs. On the other hand, I know of one adult who works as a shift manager at a fast food restaurant. Some can live independently, others cannot.
Development tends to occur at a slower pace, so patience is required.
Many have speech issues due to physical features that affect speaking. A large tongue, low tone in oral muscles, and a smaller than average oral cavity can make it difficult to enunciate. This would be somewhat like a person without Down syndrome trying to talk with marshmallows in their mouth.
People with Down syndrome are more like you and me than they are different. They experience the same range of feelings; both positive and negative. They have dreams and aspirations. They crave friendship and understanding. Bullying and making fun hurts them too; very deeply.
My Involvement With People With Down Syndrome
For several years I was a proud volunteer coach for the Guelph Giants hockey team for people with special needs. Quite a few of the players have Down syndrome. I love all the players; my youngest son is one of them. I haven’t seen them for two years and miss them.
My son, Jonny, also plays Special Olympics soccer and basketball where I get to see him play with his friends.
My wife worked as a resource teacher for several years, assisting children with special needs and their families, especially as they made the transition from daycare to kindergarten. She also ran a support group in Guelph for families with children with Down syndrome. She helped the group mature to the point where we could ultimately expand services dramatically by merging with the Waterloo Region Down Syndrome Society; becoming the Waterloo-Wellington Down Syndrome Society. My wife also spends countless hours volunteering with individuals with a wide range of special needs; she has developed special friendships with many of them. I am very proud of the great work that my wife does. Through her, I have met many people with special needs, including Down syndrome.
Here is Jonny in his Guelph Giants jersey doing a ceremonial puck drop along with a senior member of his hockey team (we have junior, intermediate and senior squads). I am standing beside Jonny. The players on the ice were the captains for the Guelph Storm and Kitchener Rangers (our big local rivalry within the Ontario Hockey League)…
Why I Think People With Down Syndrome Are Particularly Special
Many people refer to the third copy of chromosome 21 as the ‘love chromosome’. This is because a lot of people with Down syndrome have a strong predilection towards loving and accepting others. They tend to enjoy hugging people and receiving hugs. My son is definitely a hugger; to the point where teaching about personal space is a challenge at times :)
People with Down syndrome often view others in a completely unbiased fashion. They make no assumptions based on first impressions and treat everyone equally. I’ll never forget a short moment in my life when my son, Jonny, taught me an important lesson. We were walking in downtown Guelph. Coming towards us was a man who looked to be about 6’4’’ tall and ~250 lbs, with no shortage of muscle. He had a goatee, bandana on the head, a black leather vest, and tattoos all over. I have to admit, I prejudged this individual. My first impression was that he was someone who would best be avoided. As such, I started to look at the storefront to my right as he was about to pass to my left; I planned on pretending that I did not notice him. However, before the man reached us Jonny shouted out a very cheery “hello” with a big smile and gave him an enthusiastic wave. For a moment, I felt bad for Jonny because I ‘knew’ he would be ignored. Instead, this man got a huge grin, waved vigorously, and returned the “hello” with gumption. He and I also made eye contact, waved, and smiled at one another. It was a brief moment in time, but my son taught me an important life lesson. To this day, I struggle to come close to matching my son’s acceptance of others.
The love and unbiased acceptance shown by many people with Down syndrome and their unbridled joy for life is why I refer to them as having a special super-power. They are a blessing. Because of them my life is enriched.
Here's Jonny!…
Etiquette
Avoid using the “R” word. It is often used to degrade people or their actions. It has the connotation that cognitive delays are somehow wrong. I would actually argue the opposite. If the world were run by people with Down syndrome, it would be filled with far more love and understanding, and everyone would be readily accepted for who they are.
Use the term “people [or insert boy, girl, woman, man, etc.] with Down syndrome” rather than “Down syndrome people”. They are people who happen to have Down syndrome. The person comes first.
Treat those with Down syndrome pretty much like you would anyone else. You might need to exercise extra patience. They have much to contribute. Don’t accept poor behaviour from them just like you wouldn’t from others. Most importantly, include them in every day activities. They want to be as involved in life as anyone else. With so much emphasis being placed on the concepts of ‘diversity, inclusion, and equity’ my wife and I have been appalled at how many initiatives related to these fail to include people with special needs. Their lives matter too!
Funky Socks!
One of the ways that World Down Syndrome Day is celebrated is by wearing funky socks; bright and colourful, often with lots of patterns, and sometimes mis-matched. This celebration must not have been invented in Canada because it is usually pants-wearing weather in March. When at work, I always had to pull my pant legs up to show people my funky socks. So, I decided to do something different two years ago (I was locked down in my home one year ago). March 21, 2020 was a cool day so I wore a long-sleeved dress shirt to give lectures at my university. I guess I looked very much like a ‘nutty professor’ because I also wore dress shorts, dress shoes and funky socks up to my knees. I was asked many times throughout the day why I was dressed so oddly. I have never had so many teachable moments!
A treasured memory that I have is of the first group of students that I ever taught immunology to in the Doctor of Veterinary Medicine program. They were the class of 2017 and were called the “Violet Komodos”. They invited me to a social event where they revealed that they were wearing funky socks in honour of World Down Syndrome Day. It was an emotional and wonderful moment. Thankfully, one of the people in attendance was able to catch it in a knit-together photo (the white arrow is pointing at me)…
Here is my family wearing our funky socks in 2021 (L-R: Ben, Jonny, Jocelyne, Me)…
My Plans
Tomorrow (Monday March 21st [3-21]), I will be wearing my bracelet from the Waterloo-Wellington Down Syndrome Society that says “See the person. See the ability.” I will also be wearing my funky socks with shorts, not pants. Most importantly, I will be loving my wife and two boys while celebrating my youngest son’s super-power.
World Down Syndrome Day
I learned a lot more about people with Down Syndrome, thank you!
You are SO right. If the world were governed by such Super Powers, it would be a far better place. I will gladly wear my funky socks tomorrow to honour Johnny and all the other Super Heroes!! God bless you and your beautiful family.