It's a regular Halloween here everyday.

Why do people fear Down syndrome?

Why is it scary?

Why is a family "safe" if their child does not have Down syndrome?

Why is having Down syndrome "bad news"?

As I am typing this I look at Babe. She's crawling around, getting to the drawers on the television stand and pulling out DVD covers (she has a good arm on her as far as flinging stuff goes), moving onto the magazine rack and testing out her 6 teeth on the corner of a 5 month old People magazine (I really should clean more), bear crawling it to the staircase and pulling to a stand at the not-so-securely mounted gate (we have no business owning this house), every once in a while glancing at me, smiling, waving, calling out to me and to her surroundings in general.

You know, spooky stuff.

Yeah. I can see why she'd be dangerous, with her stealth crawling speed and unwavering focus that can in no way be upset by oh, I don't know, calling her name or rattling a tube of puffs near her face.

Scary as hell. This little girl of mine.

Oh, it's not her you say? It's the Down syndrome. It's not her, she's not frightening, just that extra chromosome in every single one of her cells. Makes sense. Completely separate from her - that foreign material. Oh wait, it's not foreign, it's the exact same make-up than those other two 21st chromosomes. Not foreign at all. Just more of that cell-y goodness that makes her, well, her.

But babies are not scary. No way, they're cute, that button nose is adorbs, you interject.

Fair enough. Fast forward to her at 19. A young woman, possibly not quite as tall as her Scandinavian (this means quite gigantic in a nice way) parents, very possibly with pale blond hair, and sparkling blue eyes. She'll most likely be pretty loud and like to have the last word (or sound if she isn't verbal) in any situation. I'm betting she'll have a quirky sense of humor (we can see that budding already), and she'll probably still be rocking a pair of frames. She might be into art or music, or, shudder, sports. She'll have friends and a family who think that she's awesome when she's not being a pain in the ass know-it-all (drawing from experience here, people).

Scary now?

Shit! Wouldn't want to meet her in a dark alley.

Now you're just being facetious, you say.

And you're right. And I realize this is not something to be taken lightly.

I know you don't fear my child, but I wish you didn't fear Down syndrome either. It is a part of her. It makes her who she is, Her Babeness can never truly be divorced from her having Down syndrome. I honestly believe that without that extra chromosome she would be a different kid.

I don't love her in spite of her Down syndrome, and I don't love her because of it, I just love her. And I wish everyone else did too.

That's why I get really angry sad when I see an article like this (I'm linking straight to the second page because that's what's really got me in uproar).

Let's make a few things clear here. Down syndrome does not have to be a hurdle unless there is some need for a speed of development that is the species-typical statistically measured average (an empty statistic, for zeussakes). Having Down syndrome does not mean that you will also develop leukemia. There's a greater chance, but that's all that it is. In fact a condition called life comes with the risk of many health conditions, and I hear living, and living well, makes everything even worse. Accomplishments and milestones are not what life is about, at least not for me. For me life is kisses, decadently ripe avocados, a good run, smiling, black coffee, celebrity gossip, humming along to music, sunrises, the smell of rain, a scraped knee, unconditional love, wine, friends, a tiny little puppy, newspaper ink on fingers, and so much more. Anything else would just be silly. Having an intellectual disability does not mean that a person will get abused. In fact, I find it insulting that any of the discussion would focus on those who might get abused instead of those who will abuse. To me a discussion like that is akin to saying that rape is somehow linked to the people who were raped instead of the rapist (as in women who wear short skirts...). And that's more than silly, that's disgusting. Discrimination, judgement, and hatred towards people with Ds are in part fueled by the misconception that people with Ds are somehow different from the 'rest of us' (different is good, it's just that we're all different, not that people with Ds are different together from the 'neurotypicals') or 'inferior' as in not conforming to the species-typical standard of development, of being (read with a dripping sarcastic tone, thanks). Lastly, according to studies, parenting a child with Down syndrome makes a marriage stronger, not weaker, unless you have a crappy attitude about your offspring. A crappy attitude will likely kill a marriage, any marriage, or so I've been told.

Sheesh.

I'm glad I've joined a revolution for getting rid of the bad, bad rep Ds has in the world today. Want to help? You can join too. Right here at Down Syndrome Uprising where we're all about highlighting the kind of crap that fuels the fears and responding to it in a (more or less) civilized manner (no restraining orders yet, and I'm kidding, I am*). We want the world to see individuals with Ds as we see them - individuals, equal to everyone else. Not as a separate group to be babied, looked down upon, put on a pedestal (no special angels at DSU), oppressed, stereotyped, marginalized, or referred to as them (you know the tone).

*For later legal purposes



So if you're a hard ass like us who won't let crap slide, we'd love to welcome you to the fold (or does that sound like we don't swear, because if it does that's not the way it was intended [pun very much intended]).

The good kind of revolution (meaning we won't bite unless you give us a reason to)

I'm part of a revolution. I really am (with admin rights to a Facebook page and all that fancy stuff - my first ever. Hrm. Cough. Yeah. Both revolution and admin rights. I know, I'm cool like that).

The Down Syndrome Uprising.

It began here at a typical son, and is becoming something even more awesome here at the DSU Facebook page.

And here and here.

(In case you're wondering, I'm pointing to my heart and then to my head.)

DSU works towards the world (YOU! Now I'm pointing at you, we're doing a lot of that in our house at the moment, you know, pointing in general, not always at you though...) embracing people with Down syndrome, towards changing outdated and wrong perceptions of Down syndrome and what it means to have it, and towards putting information out there that is much, much closer to all of our individual realities of what it means to either be a parent to someone with Down syndrome or what it's actually like to have Down syndrome.

I know my reality is not your reality, but I also think that there's a lot out there that isn't anyone's reality, or was someone's reality a lifetime and longer ago. And that needs to change.

But what does this 'embracing' really mean? I've seen a lot of it lately. To some, disappointingly, embracing and being vocal about it, like starting a blog with lots of cute photos and many words that really cannot be said enough times, seems to mean that one hasn't accepted Down syndrome (No, seriously), to others it means putting someone on a pedestal built of Facebook likes and media attention who really just did what any decent human being should do, such as happened in the case of the Houston waiter who refused to wait on a family who didn't wish to eat in the vicinity of a family whose child had Ds (for reals), and to yet others it means glossing over the condition with such language and attitude that no one is left wondering just how big of a cross to bear a person with Down syndrome is to a family not "safe", but expecting a child with T21 as is evident from this segment on the Today Show (and they have a medical 'expert' who doesn't even use people first language. Geez).

For me this (pointing at the blog, not at the above paragraph though, and then pointing at someone's toes, but that's a whole other non-post) is embracing. What I'm doing right here. Not giving up on awareness and spreading it. Sometimes with pretty pictures, sometimes not, but with plenty of token (not) advocacy. I may not be so aware of my kid's Down syndrome, but other people sure are. Yesterday at the hospital, while sitting outside the lab holding Babe and minding our own rather spit-y patty-cake, we were made from across the waiting room. This time around the person who'd spotted Babe wanted to be near us and talk to us because she too had a kid who has Down syndrome and she needed some positive vibes for the open heart surgery her daughter is having as we speak (so yeah, let's send some. Right now), but there have been other times where someone has spotted Babe and instead of embracing her as a regular toddler, has either made allowances (She knows how to wave hello and good bye and she should do it at the end of Story Time when all the kids do it), or assumed that she has glasses because she has Down syndrome (yes, that makes you nearly blind now too), to give a few examples. I know that sometimes allowances need to be made, accommodations will happen, but they should come after the fact, not pre-emptively due to low or no expectations, and I realize that Babe's poor eyesight can be linked to her having Down syndrome, but the route the observer takes should be more complex, and perhaps allow for her having bad eyesight just because, like in the case of that other kid, who wears the same glasses that Babe does, +6 prescription and all, but doesn't have Down syndrome, and just has bad eyesight, just because.

So I guess I'd like my genes and parenting skills to be at least equally blamed for Babe's shortcomings as Down syndrome is, perhaps even more. You know, embracingly.

Because I am guilty.

So if you're out to do some embracing, join us, like our Facebook page, spread the word, and feel free to blame me, in all senses of the word. There can never be enough advocacy. Thanks.

Cute photo. Deal with it. There's plenty more coming.

I already win

How does this work again?

I write stuff on here and someone comes and reads it, thoughts are provoked, minds changed, awareness enhanced? On a good day. Something like that?

No?

Instead, some Brazilian steals photos of my kid for some creepier than creepy purpose, some meme site links to me while I'm in the hospital with my kid and way too busy and worn out and concerned and exhausted to find out what exactly is going on.

Yup.

So why in the hell and its army of hockey sticks do I worry about good intentions that come off in the wrong way or ignorance or people first language when there are absolute sickos out there who either will do something so creepy I don't even want to think about to a picture of my kid or get some strange satisfaction from figuratively kicking a person with a disability who they only know from a picture and only see as someone weaker than them?

Why would I fight minor misconceptions and positive stereotypes when there is a huge population out there, loose in the neighborhoods of the world, whose existence is so base that they aren't just purposeless and insignificant, but they actually add evil and negativity into the atmosphere?

Because they don't matter. Really, they just don't.

The people who matter are the ones with enough humanity left in them for them to be able to see themselves, even for just a blink of an eye, in someone else's shoes, in someone else's life. People, who with the right kind of education and awareness, can make the world a better, a more positive place for everyone. Not actively contribute to its downward spiral into the abyss of mean.

So go away you creepy Brazilian and get some psychiatric help. You need it. And the person making my kid into a mean meme, get a life, read a book, love someone, you can make your life into something that matters, some day. To someone. Even if that someone is the (currently probably a very disappointed) person who gave birth to you.

I have more significant battles to fight. I have a happy life to live and in that I have you already beat. And you know what? I pity you. Your life must really suck.

Sorry.

I win.

How to make my Christmas:

I realize I haven't blogged in a while, so I sit here staring at my laptop screen and try to come up with something that wouldn't just be a repeat of the previous posts.

It's hard. It gets harder every day. As Babe grows it gets tougher and tougher to write about anything else but you.

Yes, you. The world. The people in it.

You, and not my daughter, are the reason for this blog. As Babe gets older and develops and becomes her own little person (with a not-so-little or contained person's personality) my mind revolves less and less around Down syndrome. I see her as different, yes, but I see everyone as different, and regardless of how other parents feel I don't see her as any 'more different' than others. I just don't see it. I don't. Honest.

I see her daddy's chin and easy smile on her, I see my own impatience in her demands, I see her musicality, her freakish sense of rhythm, her first encounter with the christmas tree, her empathy for crying babies, her excitement at the piano, her slightly broken crawl, her smiles and screams, her quirks and her new pink glasses. Just her.

And then someone reminds me that she has Down syndrome. Instead of the usual 'how cute' we get the 'my cousin has Ds so I have a special place in my heart for kids with Ds (I'm making this more correct instead of quoting accurately, but I just can't bring myself to not use people first language). Someone names their cat 'Tard'. Someone uses the words 'retarded', 'mentally deficient', 'mentally challenged' or something of the sort as an insult, to signify something that is slow, broken, or of lesser value, and I find myself acutely reminded that I need to remember that Babe has Down syndrome.

Because if I don't, and I forget to teach her how to tell the world, diplomatically and not, to fuck off and let her be her own person, some of the world might just sneak up on her and make her sad, or worse yet, not give her a chance at living her life the way she wants to.

I'd never be able to forgive myself.

My biggest worry for the future is not whether my kid will learn to walk, talk, drive a car, or find love, it's whether the world, you, will give her a chance to try. Instead of seeing her as a representative of 'those with Down syndrome'.

Her farts smell like goat's milk and salami, you know.

If you steal my photos, creepy Brazilian, I won't post any more of Babe.

In which I say 'my kid's a frikken individual' in 21 different ways

There are quite a few things I wanted to write about during this month of October - the Down syndrome awareness month. There are many things I would like for people to know, to understand, about Babe, about Down syndrome, and about Babe having Down syndrome. There are so many stereotypes and so much outdated and even completely and utterly wrong information about Down syndrome and people with Down syndrome out there that there aren't enough blogs or posts about it to almost even begin to make a dent. So I really should do my part, to better, and certainly more often, be that tiny stream of facts and tidbits flowing towards the great ocean of correct information.

But I've been living instead. Our little family of three has been enjoying life and our new surroundings of Seattle, Washington, learning to exist at sea level without needing to know where the oxygen tank is at all times and how much O2 is left in it, and buying rain gear and learning to wear socks (and not just in sandals) again. Babe has gotten to know Seattle Children's Hospital pretty well, I've managed to get Babe's Early Intervention services started, and Babe's been busy making new Danish, Finnish and American friends just by being her usual hollering (and I do believe she has discovered yet another level of loud) self. The Viking's been hard at work in his new and exciting position, and we've even bought a house. Well, almost, we're still on planet escrow (which really should have more wine on it, but I digress).

So while I have thought about Down syndrome, I've also thought about paint colors, rubber boots with houndstooth pattern on them, furnaces and air ducts, swing sets, doing yard work, finding a hair salon edgy enough for my needs, fall colored leaves, Starbucks, whether a Mexican Costco membership counts in the US (it does), lead paint, playgrounds, home inspections, Gymboree music classes, gutters, driving according to the rules of the road, and many more mundane and grand things.

Life.

That certainly does not revolve around Down syndrome.

So here they are, 21 quick facts everyone should know about Down syndrome, so that I can go back to looking at color charts and the new Land of Nod catalogue:

1. Down syndrome is not a syndrome. It is a genetic condition arising from having three copies of the 21st chromosome instead of the more common two copies.

2. Down syndrome occurs randomly at the frequency of around 1 in 691 births and is the most common genetic variant.

3. A person with just Down syndrome is healthy. Down syndrome is not an illness.

4. All people with Down syndrome are individuals with unique personalities and full emotional repertoires.

5. A person with Down syndrome is always a person first, not a Down syndrome child, a Down, or Down syndrome. They have Down syndrome.

6. Down syndrome is neither mild nor severe. Different individuals have different challenges and are equipped with different strengths and weaknesses.

7. A Down syndrome diagnosis is not a reason for condolences. Having Down syndrome is not cause for pity.

8. individuals with Down syndrome are capable and once they become adults they should be treated as such. People with Down syndrome do not stay children forever, nor are they like children as adults.  

9. People with Down syndrome are not angels, special, or in any way 'sent here for a purpose'. Down syndrome is biology.

10. People with Down syndrome can date, have sex, marry, go to university, have jobs, pay taxes, break up, get drunk, divorce, make good and bad decisions, and learn (or not) from their mistakes.

11. A person with Down syndrome can be as perfect as the next person. Down syndrome does not equal 'less than'.

12. Down syndrome is not something to be fought, eradicated, or in need of an ass kicking, it is present in every single cell of the individual.

13. Bringing up a child with Down syndrome does not require special skills any more than bringing up a neurotypical child does.

14. Down syndrome is not an excuse for bad behavior and it is not a reason for allowances. Down syndrome in itself is not the cause of any kind of behavior.

15. Down syndrome does not make an individual ugly, nor does it make them beautiful. It doesn't make them anything.

16. People with Down syndrome are not "too stupid to understand" when they are ridiculed.

17. Individuals with Down syndrome can be valuable and productive members of their communities as long as they are expected and given the chance to contribute.

18. People with Down syndrome are not a burden on society unless they are made that by lack of fair opportunities and expectations.

19. Down syndrome is not a subject to be avoided. Questions are good, ignorance is bad.

20. Down syndrome is no joke, but it's not a sentence either.

21. A baby is a baby is a baby. A child is a child is a child. A person is a person is a person.

Life already comes with challenges, like Mittens, don't make it harder by being ignorant about Down syndrome. 

On beauty

Different.

That's the word most people (usually the ones who wish to be kind and compassionate) use to describe my daughter, to describe people with Down syndrome. That is the word most parents of kids with Down syndrome use to describe their child. There is a movement called 'more alike than different'. There are blogs and pamphlets filled with analogies that all draw from the idea that one measly chromosome in the complex, intricate medley that is a cell is a big enough divider to make a person different from 'the rest of us'.

Now, I have no problem with being different. I like difference in everything. I like unique. I like variety. I like change.

What I do have a huge honking problem with is the assumption that 'the rest of us' are all so much the same that we can become the sea of poppies in an especially annoying gardening analogy while a person with that extra chromosome becomes a daisy, or worse, a (albeit beautiful) weed.

Well, I'm no poppy, and my kid's no daisy. I'm not more alike with my neighbor than I am with my kid. My best friend's kid is not necessarily more like her than my kid is like me, just because of an extra chromosome.

We are all different. We are all unique. The extra chromosome should not divide between us and them, as shouldn't race, religion, gender, sexual preference, nationality, language, length of the middle finger, or internet search engine preference.

What is seen as disability in today's world seems to be the last accepted other (as popularized by Said), reminiscent of the previously accepted others - one's sexual preference preceded by the color of one's skin. During my studies of American slavery I remember reading pages and pages of descriptions of the 'negro', and the 'savage'. Ideas and generalizations I thought had been left in history, but which keep returning to me when ever I decide to read yet another 'description of Down syndrome'.

I'm not going to tell you that children with Down syndrome are beautiful. That would be like saying that all blonds are stupid, people with Down syndrome are always happy, or that Trekkies are all smart. All I'm saying is that my kid (with Down syndrome) is beautiful, and that I've met quite a few people with Down syndrome who are beautiful as well.

I do wish to show that my kid is beautiful, in case there is someone who thinks that just because she has Down syndrome beauty is somehow beyond her reach. But that's as far as I'll go. 

Like snowflakes we are all unique, all different, and like snowflakes we are all the same. How's that for an annoying analogy?  

This is my child, and she is beautiful.

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Bloghopping with Down wit Dat in May 2014 with an oldie but (an under-appreciated?) goodie post. 

October's the new pink

October rocks. October is important. October is wonderful.

And October has arrived.

The month of October now means more to me than any other month. "Is this because it is the official Down syndrome awareness month?" you might ask. And my answer would be that that's part of the reason. Of course. Naturally. I want to educate and advocate and make this world a better place for everyone, especially those with trisomy 21. For Babe.

Duh. Goes without saying. (although apparently also goes without blogging - something I'm working on changing...promise. Swear?)

However.

This is the month that last year was looking unprecedentedly bleak and scary. I was in and out of the hospital and seemed to be spending way too much of my time chatting to ultrasound technicians when I clearly should have been googling the offered colors of a specific stroller to stop the Viking from acquiring a baby-blue one that the sales people in the store convinced him was 'grey' for our bundle.

But we didn't know if she was going to make it, so while I spent a lot of time on the internet as I was lying on our living-room couch, I wasn't looking at strollers, or figuring out how to make my own diapers, overdosing on pink cuteness, or looking into how to make the milk come once she was here, or filling out a registry for my Baby Shower.

I was reading up on rapid placental maturation, the point system they use to decipher level II fetal ultrasounds, the functions (and sudden failures) of fetal shunts, emergency c-section procedures vs. planned c-section procedures, and NICU stays. I was also desperately looking for others who had gone through what we were going through and come out in the other end with a little screaming infant in their arms, one adamant to stay on this earth.

Silently willing any good karma we ever had coming to becoming two of those people.

So that would make October Babe's birthday month. The month of 'the best thing that ever happened to I and the Viking'.

On Thursday babe is ONE. And we're still two of those people.

Yes, there have been health issues, there have been developmental delays, there have been illnesses and even big scares, but Babe's rising above all of that and making her unique personality, accompanied by a set of lungs that make you doubt she could have any issues with breathing, known to the world, especially that part unfortunate enough to reside directly next door or above our current lodgings.

The Babe hollers, smiles, laughs like Nelson from Simpsons when bounced just the right way, loves music and soap bubbles and dancing, babbles in a mixture of languages infused with one created by herself, throws stuff, blows raspberries, gnaws holes in things with her four teeth, expertly backs up her crawling track but refuses to move forward, and makes whoever comes into contact with her fall in love. Even with snot running down her top lip.

Simply by her loud and wide presence in the world she herself makes people aware that Down syndrome is nothing to feel sorry about. It's not a defect. It's not a hindrance. It's not less than perfect. It just is.

EL GRITO by the Babe. 

Happy Down syndrome awareness month and Happy Birthday-month Babe. I don't know what we'd do without you in our lives. It would be a lot more quiet for sure.