#WDSD321: Myths and Truths About Down Syndrome

I’m a mom in her thirties, and in the time I’ve been alive, incredible advancements have been made for people with Down syndrome. When I was born, in the 1980s, people with Down syndrome had a life expectancy of around 28 years old. When I was going to school, I never once encountered a single child with Down syndrome. Not only were they not in any of my classes, ever, but I didn’t even see them walking by in the hallways. It’s only in retrospect that this puzzles me; these people existed, surely, so where were they? But just a few short decades ago, there wasn’t a push for inclusion in education the way there is now.

It’s crazy how much things have changed. When I had my son with Down syndrome, Wyatt, in 2012, the life expectancy for people with Down syndrome had skyrocketed to the 60s. People with Down syndrome now go to school with their typical peers, they go to college. But of course, none of that mattered; I got the diagnosis, and all I thought of were stereotypes, myths, and misconceptions, things that invaded my brain through fear and a lack of knowledge.

Today, March 21, is World Down Syndrome Day. And in honor of World Down Syndrome Day, we’re going to tackle a few myths and deliver a few truths — because new moms with a Down syndrome diagnosis should never have to be scared over outdated information.

MYTH: People with Down syndrome are sick and weak.

I’ll admit, this was one of the biggest fears when I found out Wyatt had Down syndrome. Thoughts of heart defects, leukemia, and overall frailty went through my mind. But the reality is, while people with Down syndrome are at an increased risk for certain medical conditions, medical advancements have made a huge difference. Most people with Down syndrome today lead long, healthy lives. And weak? Yes, babies with Down syndrome are more likely to have hypotonia, or low muscle tone. But that doesn’t mean they can’t overcome that challenge; with physical therapy, people with Down syndrome can and do lead active lives. Swimmer Karen Gaffney has Down syndrome; she has swum the English Channel, across Lake Tahoe and the Boston Harbor, and has completed the Escape from Alcatraz triathlon. Jon Stoklosa is a 31-year-old man with Down syndrome who is a competitive weightlifter — and regularly competes in weightlifting competitions against non-disabled opponents… and wins. And while not everyone can be an elite athlete, people with Down syndrome aren’t weak and frail regardless. Just come to my house and see my two sons wrestle, or race back and forth down the hallway.

MYTH: People with Down syndrome are always happy.

This misconception is meant to be a compliment (I think), but really, it’s a bit of an insult. I heard this one all the time when I had Wyatt; people would come up to me constantly and talk about how people with Down syndrome were just always happy, and they were like angels who were never sad or upset or angry.

Those people should come hang out with me and Wyatt for a few hours. They’ll inevitably catch some pretty epic temper tantrums.

The truth is, people with Down syndrome experience the full spectrum of emotions just like everyone else does. Yes, they are happy sometimes. They’re also sad, angry, upset, confused, bored… like literally all other people. And the problem with saying they’re “always happy” is that it dehumanizes people with Down syndrome, making them little more than cute puppies meant to make you feel good and bring magical rainbows and unicorns into your life. People with Down syndrome are people first, and making overarching generalizations that deny them of their full personhood is not something positive, no matter how well-intended the comment may be.

MYTH: Down syndrome only happens to older parents.

I was 27 when I had Wyatt. There is a stereotype that only older parents have children with Down syndrome, possibly because the chance of having a child with Down syndrome does increase with age. But the majority of babies with Down syndrome are born to young parents, under the age of 35. Because I was in my 20s when I had Wyatt, Down syndrome wasn’t something that anyone really expected, but people shouldn’t think that it mostly happens to older moms.

MYTH: All people with Down syndrome are slow.

Most people with Down syndrome do have some level of cognitive or intellectual disability… but the severity of it will vary from person to person. Most of the time, it is a mild or moderate disability. People with Down syndrome are capable of learning and understanding; it may take them a little longer than a typical person, but they get there nonetheless. And just like their typical peers, each person with Down syndrome develops at their own pace, and has their own strengths and abilities. All typical children do not develop at exactly the same rate, and neither do children with Down syndrome. It’s inaccurate to say that all people with Down syndrome are “slow” or delayed, when that is simply not the case.

MYTH: People with Down syndrome all look alike.

There are some physical characteristics of Down syndrome that many people know — shorter stature, almond-shaped eyes, the palmar crease, etc., but each person with Down syndrome will have their own unique features, will resemble their family members, and do not all look the same. Each person with Down syndrome will be unique and will have these characteristics to varying extents (if at all). Wyatt, for example, has some features that are typical of Down syndrome (almond-shaped eyes, small ears), but he doesn’t have others (the palmar crease, the sandal gap). Wyatt resembles his brother and sisters, which makes sense because they have the same genes. He looks more like his siblings than he does some other random person with Down syndrome.

FACT: People with Down syndrome lead full, productive lives.

There continues to be a stereotype that having a child with Down syndrome will mean that you will have a child forever, who will never mature, will never be independent, and will never be able to work or live on their own. But people with Down syndrome, again, are different. Some may live with family their entire lives; others will live independently. Many people with Down syndrome go to college, work, get married, and have active, enriching lives. They aren’t burdens and they’re capable of accomplishing virtually anything.

FACT: Down syndrome is not rare.

Because I never really encountered people with Down syndrome growing up, I mistakenly thought that Down syndrome was rare; it’s not. In fact, it’s the most commonly occurring chromosomal condition. Down syndrome occurs across all races and classes, and approximately 1 in 700 babies is born with Down syndrome. It’s also in most cases not hereditary; this accounts for only around 1% of all cases. And as inclusion becomes more commonplace, children will hopefully grow up around people with Down syndrome, and stop seeing it as something to fear.

For more information about Down syndrome and World Down Syndrome Day, visit the National Down Syndrome Society or World Down Syndrome Day websites.

Cassy Fiano-Chesser
Cassy Fiano-Chesser is a Jacksonville native and mom to six kids. Her husband is a Marine Corps veteran and Purple Heart recipient. She works from home as a blogger and a freelance writer, and they currently live in the Argyle area of Jacksonville. Benjamin is their oldest, born in 2011, and he loves being a big brother. Wyatt was born in 2012, and he has Down syndrome. Ivy came next, in 2013, followed by Clara, born in 2015, who is a diva-with-a-capital-D. Rounding out the brood is Felicity, born in 2017, and Lilly, born in 2007. They love discovering things to do on the First Coast and going on family adventures, as well as cheering on the Jumbo Shrimp and the Icemen.


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