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?

Saturday, July 21, 2012

Good intentions get you blacklisted in my hood

Our friends are awesome.

Our friends have hopped onboard this flimsily constructed barge (I thought it was miscolored, frilly panties in a tangle, but whatevs?) we call our life and are genuinely understanding, delighting, attempting really hard to never hurt, even by accident, celebrating, being supportive in the ways we specifically wished for, rejoicing, and loving us, for us, to us and with us.

We are lucky.

Our friends have good intentions. But they also have educations and understanding.

And in our world the former can no longer exist without the latter two.

The other day I saw a picture circulated on Facebook. It was a nice photo of a girl and a boy. The girl had a cocktail dress on and the boy was wearing a suit and tie. The two of them were smiling, maybe making a face, and proudly showing what I understood to be the Hook 'em Horns sign (or something to do with death metal, who really knows?). The caption indicated that they were going to their prom. The boy had Down syndrome.

I smiled. To me the picture looked like any other slightly quirky prom shot with teens posing in their Sunday best, but still being the teens they are.

Then I made the mistake of reading the comments. One should never read the comments. On anything. Because that's when the humanity catches up to your good mood and pees all over it.

Oh, apart from a few trolls who always seem to peek out from under their selected rocks (oppressive father's basement and behind a badly pockmarked face?), there wasn't anything in the comments that was especially cruel or mean or nasty. Outright.


There were good intentions. Nice words, commendations, God bless yous, and congratulations to the girl's parents.

Because obviously (please note the dripping sarcasm here) the girl would never have gone to the prom with a boy who has Down syndrome if she weren't doing it as an act of charity. Because she pitied the boy. Because her parents had brought her up to be kind to those less fortunate. Because she wanted to give someone who would never ever be asked on a date the "best day of his life".

This was painfully clear to those who commented on the picture. There was no mention of who the couple was, what their reasons for going together were, or what they thought of the situation. Nonetheless, the automatic assumption wasn't that they were going together because they liked each other or were friends, which would have been the case had the Down syndrome never been evident from the picture. The instant assumption most of the commenters made was that this was a favor.

A pity-date.

That would surely secure her a safe ascension to heaven when her time came.

The boy wasn't a boy. He was just Down syndrome.  

Now, I would like to believe that they were going together because they liked each other and wanted to go together. Because maybe the boy is funny, or witty, or has a good heart, or is an awesome prankster, or is one of the cool kids, or sings like an angel, or has good hair, or smells nice, or can fart/ burp the alphabet, or can keep a secret like no one's business.

Or maybe the girl's a total airhead and no one had asked her and the boy was doing her a favor.

I would like to allow for a multitude of possible backstories, good and bad and downright implausible, like would be awarded to any two neurotypical individuals. I would like to think there's more to the plot than just Down syndrome. That there are two individuals in the photo, doing their individual things, living their individual, unique lives, made possible by their individual, unique and rounded personalities.

Please. Next time you see a person with Down syndrome, just see the person.

See the individual.

Especially if you're looking at my kid, because, in her case, I'm part of the package and I'm not letting good intentions slide. Not now, not ever.

Would Down syndrome eat Acapulco sand? 
I doubt it. 
My daughter would.


Blog-hopping with Jen from Down wit Dat. Visit. Enjoy. Leave lovely comments. Now go.  

Friday, July 6, 2012

On being a Down syndrome superstar

Or not.

For a lot of people a way to deal with a Down syndrome diagnosis is to go online and see what all a person with Ds will be able to do regardless of the diagnosis. For many parents this is how they initially survive. By seeing that a life with a kid who has Ds isn't all that different from a life with a typical child. There'll still be laughter, laundry, vacations, snotty noses, and school graduations. Needing to know this is only natural. And vital in the place most of the parents find themselves when they are faced with a diagnosis of a disability, especially one that entails "mental retardation" as a lot of the current medical literature still calls it, regardless of there being numerous much better, untarnished by colloquial use to denote all things horrendous, equivalents.

(While you're here, why not click once [but remember to return!] and take the pledge to end the r-word. Go on!)

For many parents it is important to see that life can go on pretty unchanged, fairly unaltered, or at least to know that a diagnosis doesn't mean that they'll never take another vacation, never enjoy another juicy piece of celebrity gossip, never go on date nights anymore, or never drink another glass of wine. Especially since often an ignorant doctor or a nurse will do, in my mind, the greatest disservice of filling the expectant or brand new parents with the gloom and doom their life will most certainly be filled with from then on. Why these professionals, who should be offering current and multifaceted information and support, feel the need to do this, is one enigma I'll probably never be able to crack. Or even begin to understand.

For new parents it is important to see that everything will most likely be fine. Just fine. And that feeling of drowning will eventually pass and be replaced with immeasurable joy and happiness.

And acceptance.

New parents need to know that their kid could be one of the 'Down syndrome superstars'. That kid who will stay smack in the middle on the typical growth charts, learn to crawl alongside his or her typical peers, say 'mama' and mean it when his or her siblings did, read at 4th grade level in the 3rd grade,  and just pretty much not really differ from his or her typical peers, or more often than not perform much better than his or her typical peers.

But. I think in reality it is important for every single parent on this globe to believe that they could birth a genius. A second Einstein. A Nobel prize winner. A hero of our times. A president. A renowned actor. A celebrated composer. A prolific author. Someone who will rise above the masses and lead them instead of just following.

But not every kid is built that way. Some kids will make up the masses.

Not every kid with Ds will keep up developmentally. Not every kid with Ds will break through the ceiling and do things no kid with Ds has ever done before them.

Every kid is special, but most just to their parents. And the occasional grandma.

But that doesn't mean they are worth any less.

Real acceptance arrives in the form of the realization that a kid might never be a 'Down syndrome superstar', that there might be significant delays, and that there might not be flurries of development regardless of hours and hours spent on exercises and therapies and directed play. No sudden changes shortly after starting supplements. That he or she might not only lag in development when it comes to the typical peers, but with other kids with Ds as well.

But it also arrives in the form of the realization that still, regardless, life is fine. Just fine. There will still be laughter, laundry, vacations, snotty noses, and school graduations.

And that most days Down syndrome doesn't even enter the parent's mind.

But summer vacation does. And the sad disintegration of TomKat.

She'll always be a superstar to me. Can't you tell?