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.
Loved this!!!!! Thank you!
ReplyDeleteThis is awesome, thanks! I grew up with disability in my family, but we didn't see that side of the family very often. The first time my mom's cousin, Charity (who has William's Syndrome), set eyes on Everleigh, her whole face lit up and she begged to hold her. If even a TINY part of that carries over to Everleigh as she grows up, anyone who knows her will be blessed with her love. Just as you have been blessed with Leanne (but you didn't need me to tell you that!)
ReplyDeleteVery well said! Love the pics of you and Leanne too!
ReplyDeleteThis is a great post and I'm almost positive that I responded to that survey. I have a sister with DS but we are 15 years apart (I am older) so I know life before and after. I'm wouldn't change a thing! I think my kids will have better lives because they know my sister. Isn't it amazing? You can't explain the "experience" but you know you wouldn't change it.
ReplyDeleteThis is a great post and I'm almost positive that I responded to that survey. I have a sister with DS but we are 15 years apart (I am older) so I know life before and after. I'm wouldn't change a thing! I think my kids will have better lives because they know my sister. Isn't it amazing? You can't explain the "experience" but you know you wouldn't change it.
ReplyDeleteI want them to go around asking if people would trade their siblings in for another to random people on the street that don't have any special needs in the family. What do you bet that number is close to half?
ReplyDeleteMy bear cub (with Ds) is a year-and-a-half between her two sisters. Her older sister, who is about to turn five, told me that we were given our youngest daughter so that the bear cub could have a younger sister to love as much as she loves the bear cub.
Hello! I just found this blog today, and I really like this post. But I was surprised by the figure that says that 84% of adults with Down Syndrome live at home. If life expectancy for an adult with DS is approaching that of a normal adult (60 yrs. vs. 79 yrs, I think), what happens if both parents die first? I'm sure this possibility must be in the back of the mind of every parent who is raising a child with DS. I suppose the sibling or another close family member typically assumes guardianship? Thanks again for the portrait of adulthood. It speaks volumes that you chose to adopt a child with DS - very encouraging.
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