Living With Down Syndrome

Down syndrome has been a part of my life since the day I was born.  As much as this makes me feel like somewhat of an expert, at other times it makes me feel completely ill-equipped to explain what the "Down syndrome experience" is like to an outsider.  I've never been an outsider; only an insider. 
Me & my big sister, Leanne

Having never experienced Down syndrome from a perspective of shock and adjustment, as a new parent whose child has just received the diagnosis, I try to imagine what the questions and concerns would be.  Perhaps you would wonder how taxing this would be upon you as a parent.  Perhaps you would wonder what kind of an impact it would have upon the child's siblings.  And perhaps you would wonder about the quality of life facing the individual with Down syndrome. 

Well, last year a survey was conducted by a physician at the Children's Hospital of Boston and it addresses these three perspectives.
My family on my wedding day.  Leanne was my Maid of Honor (or "Best Woman" as she preferred to call it)

You can read through the findings in full entirety here but the bottom line is that the "Down syndrome experience" is an overwhelmingly positive one for everyone involved - ESPECIALLY for the individuals with Down syndrome!  I challenge you to find any survey of any population of typically developing individuals that reports such astounding happiness and confidence results. 
And as for the small percentages of parents and siblings that expressed embarrassment and regret, well, I wonder what that percentage would be if parents and siblings were polled about typically developing family members.  I bet the propensity for negative feelings would be even greater.  There are always small segments of the population that will express discontent at any circumstance;  You know, the "glass half empty/poor me/life's not fair" people that are impossible to please. 
So to the outsiders who associate the term "Down syndrome" with uncertainty and fear, here's what us insiders want you to know:  It's a FORTUNATE few whose lives are graced by Down syndrome.  This survey affirmed my perspective that these fortunate few emerge happier, prouder, and more enlightened and we are ultimately grateful for this blessing.


  1. You are an angel for posting this, and in my experience, what you are saying is so, so, so very true! I'm looking forward to the day when parents receive the news and know already that their child will be welcomed as a phenomenal gift to this world. I want to congratulate you on your two beautiful children, and also, congratulations must go to your parents, your sister and your husband, for all the love circulating around your very special family! Thank you.

  2. I just read a movie review that referred to individuals with Down syndrome as "the unfortunate patients of this condition." I'm not much of a letter-to-the-editor type of person, but I am an educator (and a speech-language pathologist and an "aunt" to a precious little girl with Down syndrome), so I couldn't pass up the opportunity to educate. As I was composing my nice note to the organization (I know they weren't trying to be offensive), I remembered this post! I cited a couple of the statistics from the Boston study and referred them to this post for more information. I gave them a suggestion for re-wording the sentence in a much more positive light, and I hope that (with your help) a few more people will be educated about the not-so-scary reality of Down syndrome!