Tuesday, July 31, 2012

Don't just stare, ask me about Down syndrome

In two weeks Babe will have spent 10 whole months with us. A lot of the time it seems like I blinked and she tripled her birth weight, sat up all of a sudden, and bit me with her vampire-fang. Other times it feels like this is the way that it has always been, like I can't even remember my life without her here.

I guess that's what happiness does (even to a slightly wine-marinated) brain.

And believe it or not but in those almost 10 months, apart from a few additional doctors' visits, a routine of exercises, some directed play, and a few hours of chatting with a physiotherapist every week, we haven't really been affected by Down syndrome in any way.

Other than on the level of thought.

I haven't blogged about Babe, her meeting (or not) her milestones, her strengths, her weaknesses, her likes, or her dislikes, because there just isn't much earth-shattering blog-worthy anything to report. I'm not going to blog about something I wouldn't want to read myself. Babe's a cool little being. And oh so special, but pretty much so just to me, her dad and her Mummu and Pappa and maybe a few other closely linked folks. That's it.

No one wants to know how much I freaked out when my toothless little sidekick seemed to sprout two sharp fangs overnight and then - believe me, this is the only way to describe it - endeavored to join team Edward as one of the key players.

That would be boring. Reading about other people's kids as if they're the first one to ever have done anything for the first time usually is if you're not the parent or at least somehow connected. I get that. Even when milestones matter 'more' and are sometimes first met after a grueling game of practice, patience, blind faith, and a little bit of desperation.

So I blog about us (Duh. I'd want to read about me, wouldn't you?). How having been made part of this 'Down syndrome community' has affected us.

How we feel about it all. How being part of a 'community' in which the only uniting factor is one extra chromosome can be the coolest thing ever because you will find people who think more or less as you do (the cool way, obviously) that you would have never connected with if it weren't for that variant of 47 (incidentally, 'Variant of 47' will be the name of my tambourine/ gypsy band that I'll kick off once I get sufficiently stocked on tambourines/ gypsies, don't steal it), but also be extremely hard when something you strongly believe in and have advocated and fought for gets shot down from within the 'community'.

Yup. There's something specific on my mind. Something that seems to divide many opinions. Namely, how exactly to feel and act about those not part of the 'community' when they are talking of Ds or people with Ds (usually your kid) and resorting to generalizations, making marginalizing comments, reducing the person to their diagnosis, or just speaking without really thinking things through, but not being mean or nasty. Just misinformed and thoughtless.

There are those who are simply not bothered by the 'positive' (always happy) stereotypes, those who will try to divine whether the commenter means well, those who will attempt to understand where the person is coming from and what their motives might be, those who like to shrug off, redirect, and avoid confrontation, those who give free passes to people who 'grew up in a different time' or 'have a different background', and those who want to avoid alienating potential allies.  

Clearly, I'm not one of those people.

I'm not a fan of confrontation for confrontation's sake (although I'm sure my mother would disagree), but there are certain things I just cannot let go. For me it comes down to what kind of a world I'm willing to settle for and the kind of legacy I want to leave for Babe and all those with any kind of disability/ genetic variant/ different ability who will come after her, and the kind of people I want her to be surrounded by and interact with in her life.

I want her to live in a well-informed world. A world that will easily see past her diagnosis.

I don't want people to just be nice to her, or about her. I want them to treat her like any other person, based on her individual attributes (On my other blog that would totally refer to breasts. I'm such a bad parent, aren't I?).

I want for the world to see her, what is good about her, bad about her, and perhaps even downright evil about her (I know I for one have more than one evil bone in my body which I'm working hard to cover with enough good to at least do no permanent damage). I want the world to see her Down syndrome as just a part of her, but as nothing that defines her.

So you see, I can't afford to settle. I can't shirk from confrontation. I can't recruit allies at the cost of correct information.

I can't live in a world that's nice. I want to live in a world that's educated, informed, and wonderfully, intricately complex, sometimes horrifying, sometimes mind-blowingly loving, and always changing and evolving.

I'm getting a few t-shirts printed that will say 'Don't just stare, ask me about Down syndrome'.

In Mexico, where we live, it's usually much more about the hair color than anything else.

What's your T-shirt going to say?


  1. My wee brother has Ds. I always laugh when people bring up the cheerfulness thing because he is, aged 14, a hormonal, moody little shit.

    Can my tshirt say 'we've been trying for 5 years and asking about kids will end in embarrassment FOR YOU'?

  2. Can mine say 'I'm *just* a SAHM'?

    HOTDAMN your banner picture is the cutest.

  3. My t-shirt will say "Just because my son can't talk, doesn't mean he doesn't have lots to tell you." Great post.
    Also, in the spirit of blogging, networking and chain letter fun, I wanted to let you know that I nominated you for the Versatile Blogger Award!
    If you feel like participating (and have the time to do so), please visit my blog, More Than Words http://mthanw.blogspot.ca to check out the details.
    Have a great weekend!

  4. You are such an excellent writer.

  5. how's Seattle? I miss your updates:( selfish, i know....


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