It’s October, which means it’s Down Syndrome Awareness Month. I’m guest posting for Kid’s Creek Therapy this week with a challenge to parents of kids with Down syndrome. Here’s an excerpt:
Around the country, people are wearing crazy socks and attending Buddy Walks. Some folks with Down syndrome are being featured in a video shown in Times Square, a teenage soap opera has a Down syndrome pregnancy storyline, and renewed emphasis is being placed on discouraging people from using the R-word.
Pretty awesome, right?
As a mom to a five year old son with Down syndrome, I feel conflicted at this time of year. Some years we participate in Buddy Walk, and some years we don’t. In the beginning, we enjoyed them because it gave us the opportunity to meet other families, but the down side is there’s a little bit of a “preaching to the choir” aspect to it. Perhaps if the standard Down syndrome colors of blue and yellow were as ubiquitous in October as the pink is for breast cancer I’d feel a little bit more like we were accomplishing genuine awareness. Speaking of which…
This is a great post, Andi. When CF awareness month rolls around in May, I feel like I really need to get it out there because people AREN’T aware. They don’t know what it means and they don’t know what it does. People who met me post-transplant have no sense of my life PRE-transplant, which was a completely different ball of wax.
But that being said–I don’t do the CF walks or bowl-a-thons, because as a post-tx person, I’m not really “supposed” to be around CF people, because of germs. I don’t want people to think that I’m a walking advertisement for CF or transplant—I don’t want them to think that’s the only thing about me, that it defines who I am. It’s a difficult balance to achieve.
I agree with you about CF – I don’t think most people know the difference between CF, CP, MD, and MS! And they are all completely unrelated, LOL!
It’s interesting what you said about people not knowing what you were like pre- versus post-transplant. Sarah Kate’s condition doesn’t really have a “before and after” but we’ve had a similar experience. When she was seven, I first posted a compilation video of her progress toward walking (an earlier version of this one). That was back in 2010 and we had been living here for about two years. Our neighbors had a daughter her age and the two spent a lot of time together. When her mom saw the video she told me it had never dawned on her before what Sarah Kate had gone through in order to learn to walk. It was surprising to me that she was surprised.
I like the idea of awareness , but one misguided person who makes an erroneous opinion popular can derail the point and mislead others.
Totally agree about people not truly understanding particularly about the hugging/cuddling. My Big-C is only 2 years old but will hug kiss anyone who asks, worried that this will carry on and either get him into trouble, he becomes a victim, or another reason for bullying. When I mention this to friends/ family they tend to shrug it off, but a few actually get why. I think now since he’s young it’s not much of an issue, but the trouble is he keeps getting older and I haven’t figured out how stop the aging process. Love your posts and your kiddos!
I agree that at age two it’s less of an issue, but as he grows older and becomes more independent (and without constant supervision), it can be worrisome. I don’t think we’re quite there yet, but the day is coming.