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 full/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.