By: Confessions of the Chromosomally Enhanced
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.
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.
The first study evaluated surveys from 2,044 parents or guardians, representing an estimated response rate of 29 percent.
- 99 percent of parent/guardians said they loved their child with Down syndrome
- 79 percent felt their outlook on life was more positive because of their child
- 5 percent felt embarrassed by their child
- 4 percent regretted having their child.
The second study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:
- 94 percent expressed feelings of pride about their sibling
- 7 percent felt embarrassed by their sibling
- 4 percent would "trade their sibling in" for another
- 88 percent said they felt they were better people because of their sibling with Down syndrome
Of siblings aged 9-11:
- 97 percent said they loved their sibling
- 90 percent felt their friends are comfortable around their sibling
The third study evaluated survey responses from 284 people with Down syndrome (estimated response rate, 17 percent). The average age was 23, and 84 percent were living with one or both parents/guardians. The findings:
- 99 percent said they were happy with their lives
- 97 percent liked who they are
- 96 percent liked how they look
- 86 percent indicated they could make friends easily
- 4 percent expressed sadness about their life.
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.
The Dual Divas of Down syndrome