3/21 World Down Syndrome Day

Down syndrome. You can spot “them” from across a gymnasium. Their eyes are different…they have a flat nose bridge. They have some kind of learning disability.

And that, dear friend, is all I knew about Down syndrome 8 years ago. And then an individual who happens to have Down syndrome came into my world. It temporarily upheaved my life. Now it’s my norm, and I wouldn’t change a thing. This individual with Down syndrome has made a profound impact upon my life.

But before I describe this impact, I’d like to tell you some other things I now know about Down syndrome. I hope you’ll read this and understand.

March 21, or “3/21” was chosen as World Down Syndrome Day because of the significance of the numbers in that date.  

Most humans have 23 pairs of chromosomes within the nucleus of each cell in their bodies. The genes within these chromosomes give each of us our uniques traits. Individuals with Down syndrome have a little something extra on the 21st set of chromosomes. Instead of this set being a pair, for some random reason, they have triplets here: 3 chromosomes on the 21st set. This is what makes Down syndrome (also called “Trisomy 21”). It happens naturally in humans, in about 1 out of every 700 births. It’s rarely hereditary (less than 1%). The chance of having a baby with Down syndrome increases with maternal age. However, most babies with Down syndrome are born to young mothers…(no doubt since young mothers make the most babies). There is no “cause”. It’s just because.

To clarify: it is not caused by sin, incest, booze, marijuana, or LSD, or any of the other depressingly ignorant notions I’ve seen posted online. It just happens in nature. Like 4-leafed clovers, cleft palletes,  or left-handedness.

So 3/21 was chosen for the 3 and the 21. Now you know! And that makes it easy to remember the date, AND remember some cool sciencey-stuff about human genetic material.

There are about 400,000 people with Down syndrome living in America right now. People with Down syndrome are recognizable. They have unusual almond-shaped and lidded eyes. They are shorter than the average person. Because the previously mentioned chromosomal disorder can affect the thyroid, they may be subject to being overweight.

About half of individuals with Down syndrome are born with a heart defect. Some may require surgery to correct that defect at some point in their lives. Many wear glasses because of eye problems. Hearing can also be an issue. They have elevated incidences of leukemia and Alzheimer’s within their population.

Down syndrome is discovered by either prenatal testing or at birth. About 90% of those diagnosed prenatally are aborted.

In 1910, children with Down syndrome lived to about the age of 9. Today, 80% of adults with Down syndrome reach age 60, and many live much longer. Individuals with Down syndrome are not always happy, nor do they all like to hug or be hugged. They are individuals, just like you and I.

At the risk of stereotyping, there are some traits aside from general appearance that many parents and friends of people will tell you they all share: They love music. They want to fit in and have friends. They can learn to read. They like to make you laugh. They love to laugh. They find what it is they like or enjoy, and stick with it. They are passionate about things. They are stubborn. They are strong-willed. They know what is important in life. They can teach you things you never thought you needed to know.

So for World Down Syndrome Day, I’d just like to say thank you, to my youngest daughter, Presley, who brought Down syndrome front-and-center into my life. And thank you to my husband, Rob, who has taken this journey with me, and been the voice of calm and reason whenever I’ve need it.

Presley having Down syndrome was a surprise. Prenatal testing showed my risk (Eek!), then additional testing ruled it out (Whew!). Then when she was born, Surprise! “Wait…what? This can’t be! They said she didn’t have it!” …And I was shocked and sad and scared, because remember, at that time, I only knew:

Down syndrome. You can spot “them” from across a gymnasium. Their eyes are different…they have a flat nose bridge. They have some kind of learning disability.

But here she was, and I didn’t see “Down syndrome”, I saw this perfect little baby. A baby who had some immediate health concerns and needed the miracle of modern medicine, and a baby who needed me to be there for her. And I had to rise to that challenge. I had to learn what I could about Down syndrome.

Now feel I have to tell other people about Down syndrome so that others understand and “get it”, and don’t fear her or underestimate or discriminate against her. I want her to be accepted and treated like anyone else.

I have to be her advocate. I want people to know Down syndrome is not scary or contagious. You can talk to people with Down syndrome; not at them or over them. You can treat them as you would anyone else.

We have very high expectations for Presley. We want her life to be as normal and average as possible! Individuals with Down syndrome can live independent lives with the right support and assistance. They go to school (yes, college even!), work, and contribute to society. Their cognitive delays are mild to moderate, and educators are working every day to unlock their full potential.

My youngest daughter is just a regular kid. She has challenges. Some things take her longer to master. Those baby milestones came and she passed them all…just sometimes years later than mainstream kids. But she did it. She had to work extra hard; harder than mainstream kids to master her goals.

Did you know that a survey of people with Down syndrome found that 99% indicated that they were happy with their lives, 97% liked who they were, and 96% liked how they looked? Isn’t that awesome? What the heck is wrong with the rest of us?!

So I understandably laugh a little when I see a news report that refers to someone as “suffering from Down syndrome.” I really don’t think that’s possible. They seem to like themselves and their lives.

Another survey of parents of children with Down syndrome indicated that 99% loved their son or daughter; 97% were proud of them; and 79% felt their outlook on life was more positive because of them.

Today is a great day to learn a little something about Down syndrome…as if I need an excuse to talk about it. It’s changed my life, and truly for the better. I’m still a flawed human, but I have a greater understanding about priorities, love, patience, kindness, equality, and happiness.

Please help me by giving respect to the lives of  those with Down syndrome. Their lives matter. Through respect and understanding, individuals with Down syndrome can have a positive affect on the world, as they do upon the lives they touch: They don’t weaken society. They bring out the best in society.

As Presley would say, “Peace, out.”

 

If you’re pregnant with a child with Down syndrome, I encourage you to keep reading and learn all that you can from many sources. You owe it to yourself to make an informed and educated decision about your baby. You’ll hopefully know more about it than I did when Presley was born. You won’t regret it, I promise.


http://www.ncbi.nlm.nih.gov/pubmed/21910244

http://www.ncbi.nlm.nih.gov/pubmed/21915989
 *There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4% and mosaicism accounts for about 1%.   - See more at: http://www.ndss.org/Down-Syndrome/Down-Syndrome-Facts/#sthash.oupSI7O0.dpuf

		
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2 thoughts on “3/21 World Down Syndrome Day

  1. Thank you so much for sharing your thoughts, knowledge, and story. I am happier because I read it, honored to know many people with different disabilities, and I appreciate the reminder to see all people as individuals with special gifts as well as unique struggles. I’m going to share this with my 4 children and hope you continue to write. You have found yourself a new follower!
    Blessings,
    Tania

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