Monday, October 3, 2011

Aware of what?

I'm a little wary of the moniker of Down Syndrome Awareness Month. To me, the concept of an awareness month is usually geared towards a 'problem' - one that needs people to be aware of, help raise money for, etc. And I'll just go ahead and spell it out, I don't think Down syndrome needs 'fixing.' I think some of the research into helping people with Ds maximize their potential is interesting, but I have no interest in the pursuit of a 'cure.' I have plenty of thoughts about the research into earlier, less invasive and more accurate prenatal testing, but I haven't decided yet whether this blog is a place I'd like to write about it.

So, having said that, why am I participating in this exercise? Well, there ARE a lot of things I'd like people to be aware of. When Pacey was born, I had zero experience with Down syndrome. Literally zero. I hadn't known anyone personally with Down syndrome, although I suppose I did remember that character on that terribly depressing show, Life Goes On.

So I guess I'd like to help people understand what it's like to be a parent of a child with Down syndrome, as well as how...not so very different Pacey is from other kids. There's a great campaign out there regarding the awareness of Down syndrome with the tag line (motto?) "More Alike than Different." I love this line for its simplicity and accuracy, and it really speaks to some of the myths surrounding Ds (no, my child is not always happy. He has a generally good-natured personality, but experiences the entire range of emotions like any human being)

I also like to think that maybe these blogs can help someone facing a diagnosis of Down syndrome, either in utero or at the time of birth, maybe to help dispel some of the fear surrounding the thought of raising a child with disabilities. I feel like I would have gained SO much comfort in reading some of these blogs after Pacey was born - seeing the adorable faces of the kids, the completely typical relationships many have with their siblings, and reading the words of people having traversed the path ahead of me. And don't get me wrong, I like to read about the challenges as well as the touching moments. I'll be honest and say that any blog I read in which the author asserts that raising a child with Ds is like raising any other child just doesn't ring true for me. Raising Pacey is different than raising a typically developing child. Not always harder, either. Hands down, right now, my daughter is far more challenging to parent than Pacey.

Anyway, this is a bit of a ramble but I thought this might be a good reminder for me to look back on as the month progresses, to remind me why I think Down Syndrome Awareness Month is important. I hope you do too.

1 comment:

Tami Leitz said...

I so agree! When some of my friends told me they were blogging for DS wariness last year I was like, what is there to be aware about? (as in fix) Then the next day another friend asked me if Down Syndrome and retarded were the same thing? Um, maybe we do need a little awareness. I just love reading about the day to day because it is hard and different but it is good too.