Living
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.
Its findings:
- 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
By: Confessions of the Chromosomally Enhanced
14
With
Down
syndrome
Aunt Leanne