Down Syndrome: What It Is, What It Isn’t and Why It Matters

World Down Syndrome day is March 21! This is an opportunity to educate, equip and advocate for a better world for those with Down syndrome.
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Last Updated
April 22, 2019
posted on
March 19, 2021
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5
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This Sunday is World Down Syndrome Day, a day to raise global awareness about Down syndrome and advocate for the rights of people who have it.


Celebrating World Down Syndrome day on the 21st day of the 3rd month of the year symbolizes the triplication of the 21st chromosome, which is what causes Down Syndrome. Typically, we have 46 chromosomes total—23 from the mother and 23 from the father. People with Down syndrome have an extra 21st chromosome, so they have 47 chromosomes.

Down syndrome, named after English doctor John Langdon Down who first categorized the condition, is not a birth defect, it is not a disease, and it is not contagious. Down syndrome is a genetic disorder that can cause a number of factors all of which depend on the individual.

People with Down syndrome may be hard of hearing or have difficulty with their vision. They may have slower muscle function or have a hard time remembering things. Some people with Down syndrome have heart conditions and need surgery.

Having seen a number of children with Down syndrome over the years in my practice, I’ve learned that we often greatly underestimate those who have this genetic disorder. Kids with Down syndrome can do much more than we think. Simply because they may take a longer time to respond or find the words they want to say does not mean they aren’t intelligent and capable human beings and as is the case with all children, when we believe in them they can achieve even more.

One of my favorite portrayals of this is in the film The Peanut Butter Falcon. In this movie, actor Zack Gottsagen, who has Down syndrome, plays Zak, a teen whose dream is to become a professional wrestler. Zak runs away from home and befriends a fellow traveler. The movie portrays the reality of someone who has Down syndrome and how even though he may have physical limitations, he can do anything anyone else can, especially when he has support from friends and family.

I’ve written before about the difference between talking up and down to your kids. What I mean by that is, you can treat your child as though she is already the child you want her to be, not the child that she is.

When it comes to children with Down syndrome, it’s not a matter of talking up or down to them but thinking about them in an up or down way. Do you assume they will fail at sports simply because they have this genetic disorder? Do you assume they can’t make good grades or graduate from high school or go to college because of their extra chromosome?

When we collectively think this way about a group of people, we end up systemically holding them back. And when this happens, children with Down syndrome don’t get the opportunities other kids do. Schools, communities, even churches won’t be as open to letting in a child with Down syndrome simply because they’ve made negative assumptions about their capabilities.

On the other hand, when you think up about someone, when you assume they can do anything they put their minds to, you are immediately more open to letting them in, giving them opportunities, and giving them chances at trying new things. In environments like this, children with Down syndrome can thrive.

My patients with Down syndrome simply have a genetic disorder that affects certain areas of their lives, but they are not deficient or less than. They are not incapable or hopeless. In fact, they are the opposite. These are the kids defying the odds, proving their society wrong, and on the way, giving hope to the rest of us.

To learn more about World Down Syndrome Day, visit worlddownsyndromeday.org. I highly recommend watching the video “Just Like You” that highlights what it’s really like to have Down syndrome and how you can work to better understand and improve the rights of Down syndrome individuals in your community.

If you’d like to learn more about how to talk up versus down to your kids, watch my free webinar “What to Do When ‘No’ Stops Working” here.  

Dr. Meg Meeker, MD

Practicing pediatrician, parent, grandparent, coach, speaker, and author. Say hello @MegMeekerMD

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