Thursday, October 27, 2011

31 for 21 - Day 27 - 3 Things I Wish People Understood About Down Syndrome

Today we write in a united voice for one last Thursday in October.  A group of bloggers who write about life and Down syndrome have been writing on a joint topic each Thursday during National Down Syndrome Awareness Month and this is the last one.  It's been quite a challenge.  Lots of late nights trying to squeeze in a blog post and yet there has been so much to constantly write about.  It's been a privilege to get to talk about and examine different aspects of Down syndrome all through October and I thank you readers for following along with this journey.

Before I continue, I wanted to post again that Love My 3 won the Starbuck's Card drawing for last week.  Please send me your email address here and I will send you your $10 Starbuck's Card.  Congratulations!!!  This coming Monday, October 31st will be the last drawing.  Anyone who leaves a comment by October 31st will be entered into the last drawing for a cup of Joe on me!

Today's topic is "3 Things I Wish People Understood About Down Syndrome". This could actually be a list of about a million things, but here are three that I think are important.  It's funny, my list changes on a daily basis.   I hope that this month of blog postings has helped to shed some light where there is darkness and has taken away some of the mystery that tends to surround what is means to have Down syndrome and what exactly Down syndrome is.  

Baby boy always sleeps on his tummy.  Even right after heart surgery.  It's his spot.

One:  You can’t have a mild or severe case of Down syndrome.  It is like having a mild or severe case of being pregnant.  Either you have it or you don’t.  This leads naturally to the fact that every single person who has Down syndrome is an individual.  Their capabilities, areas of expertise, interests and personalities vary from person to person.  Just like you and me.  We would never say a person has a severe case of being a female.  Either you are a female or you are not.  Either you have Down syndrome or you don’t.  The symptoms that go along with Down syndrome may be severe or mild such as the heart defects or the digestive problems, but having Down syndrome should not ever be characterized as being “mild” or “severe”.  If you are going to have a case of anything, I hope it is a severe case of a good sense of humor.   Also, just as a quick FYI, telling someone that you think their child has a "mild" case of Down syndrome is never a compliment.  It's basically invalidating that child as a person and invalidating that, yes, they do have Down syndrome.  Just sayin'.

Two:  People who have Down syndrome understand the world around them.  They know what the R word is.  They know when they are being made fun of.  People who have Down syndrome know when they are being patronized.  Sometimes they may have a more difficult time expressing themselves because of either hearing loss or difficulty speaking due to the shape of their mouth or some speech impediments, but they understand what is being said about them and around them.  People who have Down syndrome experience the same emotions that you and I experience, but that range of emotions is often overlooked.  
I recently received an email about a little girl who is in middle school who has Down syndrome and who says she wants to die.  Yes, you read that correctly, DIE.  She wants to die because she knows that people just pretend to like her.  The kids she goes to school with do not realize that she GETS IT.  She understands.  Are her peers intentionally trying to be mean?  No.  Have we done a good enough job with our children and the people we interact with every day to help be more sincerely accepting and understanding of people who are different?  Probably not.  It is something we can all probably work on.  Being friends or being kind to someone who is different is not an act of charity.  It is about being a human being.  About treating others with the respect, kindness and sincerity we all desire.

Three:  Down syndrome does not occur because you marry your cousin.  It does not occur because you drank too much alcohol before you got pregnant.  It does not occur because you are too old to have a baby.  It is just something that happens.  In fact, it is the most common occurring genetic disorder that occurs in approximately 1 in 800 live births.  According to the NDSS site:

In every cell in the human body there is a nucleus, where genetic material is stored in genes.  Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.  Normally, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. 

Down syndrome is usually caused by an error in cell division called "nondisjunction."  Nondisjunction results in an embryo with three copies of chromosome 21 instead of the usual two.  Prior to or at conception, a pair of 21st chromosomes in either the sperm or the egg fails to separate.  As the embryo develops, the extra chromosome is replicated in every cell of the body.  This type of Down syndrome, which accounts for 95% of cases, is called Trisomy 21.

Mothers and fathers who have a child who has Down syndrome did not do anything "wrong" and it is not anyone's "fault".  It is just a variance is cell division that happens at the time of conception.  

Four:  Okay.  I know-- this is supposed to be the 3 things I wish people knew, but here is the one that is truly the essence of this blog and I feel so very strongly about spreading the word to try and help stop the insanely high number of babies who are aborted just because they have Down syndrome--Having a child with Down syndrome will NOT ruin your life.  I don't know if I have ever put it out there in these exact words.  I try to get this across with stories of Joey's heroism and how much his life has impacted our lives, but I want to be completely clear about this.  Down syndrome will not ruin your life, your spouse's life, your other kid's lives, your friend's lives and your child who has Down syndrome will not "suffer".  Do some of the health issues absolutely and completely SUCK???  Oh, hell, yes.  But, at the end of the day, Joey is our child.  He is our son, Tommy's brother, Grammy's and Grandpa's grandson and he is the light to many, many others who have been inspired by his fighting spirit and life.


  1. I love your list of four. . . spot on! Love the pictures too. There is just something about a sleeping child :)

  2. This is an incredible list and so well written. I love #3. It was almost my topic today too but I went minimal. So glad that you outlined this like you did. And the photos of him are just priceless.

  3. Utterly beautiful post. And the photos are stunning. I could just feel the snuggles when my daughter was little looking at the ones of Joey sleeping.
    thanks for sharing your heart.


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