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Friday, November 01, 2013

The Day After

Another October has come and gone. Another 31 for 21 finished.

Thanks to everyone for participating in the annual blogging challenge for Down Syndrome Awareness Month.

I know some people express that it gets harder every year to blog every single day in the month of October; especially about Down syndrome specifically. I know it feels like you've come to a point where you've said (blogged) all there is to say about Down syndrome.

But please don't be discouraged. From the beginning (Tricia) said that every single day didn't have to be a post that was Down-syndrome related; and that still stands today. The point of the challenge is just that - a challenge to yourself to blog every day. If you miss a few days - it's ok! - the blog police are not going to come get you!

And even if you feel like you've said all there is to say - just remember, you never know who all is reading  your blog. Every day there is a possibility of a new family getting a Down syndrome diagnosis and they might stumble across your blog. You never know who you are reaching. You never know who might come away from your blog that day with a better understanding of life with a child with Down syndrome.

Maybe it's time to change the name to National Down Syndrome Awareness and Acceptance Month. I know there is some consensus in the Down syndrome community that awareness has been raised and we don't need to raise anymore awareness; that people are aware and what we need to be advocating for is acceptance.

I agree about acceptance, but I'm not so sure the intentions behind awareness have been fully met. Yes people are aware of Down syndrome. They know of Down syndrome, but there are still stereotypes. There are still misconceptions. There are still negative and false assumptions about people with Down syndrome.

For the new parent receiving the diagnosis of Down syndrome are they really aware of what that means today? Or do they still have an outdated image in their mind of what Down syndrome was years ago?

Has the right kind of awareness been raised outside of the community? The kind of awareness that paints a more accurate picture of the capabilities of people with Down syndrome? Or are people still not aware about Down syndrome until they have a reason to be - until they have a loved one with Down syndrome in their lives.

I don't claim to have all the answers, but I don't think we can totally stop the campaign to raise awareness either. I think we need to expand that campaign from awareness to include acceptance though. Hmm... should I start a change.org petition to get "Acceptance" added on to that monthly designation?

Since today is also the day after Halloween here are a few Halloween pictures of The Supergirl, The Pirate, The (not-so-bandwagon) Red Sox fan, and The Civilian!

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Cindy said...

I love this. I also feel people are 'aware' of Down Syndrome, but are still afraid of what it means for them if they've just had a child diagnosed. Or they're afraid of what that means for their child in a class with someone who has Down Syndrome. Adding Acceptance to that monthly designation is a great idea!

lovemy3 said...

Hailey is 2 1/2 and I had the most archaic view of Ds in the world! I'm embarrassed of how little I knew about Ds! I do feel like I've said it all before, but I've gained readers with each year. Hopefully some of those are new readers or new families! Love the costumes :-) Thought of you when the Red Sox won the other night. Figured you were ready to throw a party!

Anonymous said...

lOVE YOUR COMMENT. kEEP IT UP. love the costumes, supergirl for Kayla and pirate for Lucas!!! Yea, the Red sox won!! and your costume too!! Joe,:}

Mardra - Grown Ups and Downs said...

Thanks so much for Hostessing the Challenge. I did not write about DS everyday, but I did get 31 posts up in October.
I also read so much! And I've bookmarked more.
I think it's important to include the "other" posts because, as you know, life isn't all Down syndrome, it's life. Woohoo Crazy full life. ANYway, thanks again for your thoughtful posts and I'll see you around :)

Unknown said...

Michelle, count me as one of the parents who stumbled upon your blog way back five years ago shortly after my son was born, and I took to the internet to find something, anything, everything possible, about parenting a kid with DS. I will be forever grateful for your and the other early bloggers' willingness to share the journey. Thank you.

On another point you've mentioned, I couple weeks ago I attended a business conference at which the keynote speaker was the founder of the Baby Einstein product line. Near the end of her presentation, she launched into a rant, a real rant, again "awareness raising," condemning it as a waste of time and money and energy, and that instead we should be focusing on funding "research," in her case, for cancer. She was especially sick of pink everything, pink soup cans for pete's sake, with little money going to research. But I had just finished celebrating our local Buddy Walk, and it stuck me, at that moment, and again reading your piece, that maybe I and many people feel (rightly or wrongly) that these things are all related. I'm not sure that I can separate awareness from acceptance from equality from inclusion. I realize that words have power, that words like "prevention" or "cure" are very different from "acceptance" or "research." But I'm not sure how to parse it all out or measure each one for their success. When we post up or share videos on Facebook of a kid with DS throwing in a perfect three pointer, or getting elected homecoming queen, or opening their own business, are we promoting awareness or acceptance, or both? So for how many words will we need change.org petitions? Equality? Justice? Respect? But hey, I'm okay with having a new one every five or ten years, if it means we've accomplished the previous. (-:

So thank you again for your blogs. There was only one thing in your "Ten Years In" post that I take issue with, and that was when you said there was nothing special and no great life's lessons to be learned. You're so wrong about that!