Dear expectant parent with a prenatal Down syndrome diagnosis

I won't say that I know how you feel, because I don't. No one does.

To say that, would be unfair and dismissive of your feelings. It would suggest that my path would be your path too, when the truth is that there is no one solution. No one way.

However, what I can say is that I've been where you are now and that you are not alone.

I too was presented with a diagnosis. Mine came at 13 weeks of pregnancy, in the form of a grainy copy of FISH results from a Chorionic Villus Sampling. A couple of dots on a chart highlighted with neon-yellow. One line of text on the bottom.

"Female with Trisomy 21," the paper said.

It wasn't a big surprise. My husband and I had agreed to the CVS because an ultrasound had revealed that the fetus, my daughter, had edema and there was a cyst on her neck. The doctor was almost certain there was a chromosomal variation.

I had asked the doctor about termination and my rights (we were living in Mexico) prior to receiving the specific results, and in that smallish conference room with someone's laptop charging in the corner, I was presented with a choice: My daughter had Down syndrome and I could either terminate the pregnancy or continue.

The doctor would support whatever decision we made and either organize an abortion or bring in a geneticist.

To say that there was no choice for me, would be to tell a lie. I am pro-choice. I try to live ethically and with compassion. So I weighed my options. I was happy to have a choice. An informed choice. I considered and still consider myself one of the lucky ones. Not every woman gets to decide over their own body and life. I know I'm privileged.

In the week that had passed from the ultrasound to receiving the diagnosis, I had read everything I could find on Turner syndrome, Trisomies 13, 15 and 18, Cystic Fibrosis, and Down syndrome, although I'd felt I was already somewhat aware of the realities related to the last possibility. For my husband and I there was no fear, no unknown, just a fork in the road. Together we made a decision.

We, the adamantly atheist, educated, and rather rabidly pro-choice couple, felt that life with Down syndrome was no better or worse than a life without. Our daughter's life would be what we and she made of it - good, bad, brilliant or not, only time would tell.

We had decided we wanted to have a child. For us, that child having Down syndrome did not change our intent. I had read enough to know that life could and would be good, as normal as it ever was going to be for us, strange, unprecedented, wonderful, mundane, awkward, boring, exceptional, and everything in between.

Somehow, her having Down syndrome just added to the idea of her unique existence. While we were aware of the list of potential health issues related to Down syndrome, we were even more keenly aware of the fact that life in itself came with a laundry list of potential health issues, and that no one had ever escaped living without dying. Eventually. We understood that intellectual disability and developmental delays had nothing to do with worth, value, humanity, or what it means to be happy or lead a happy life.

We still feel the same.

I will not insult your intelligence by telling you that this diagnosis doesn't change the premise of your pregnancy or try to convince you that it shouldn't. Your mind might have already gone from wanted to unwanted. What I will tell you however, before you decide one way or the other, is that you should do so only after trying to understand what it really means to have a child with Down syndrome, and more importantly, what it means to have Down syndrome, what your child's life could and would be like. Look beyond the stereotypes, the list of 'what could go wrong', and the ignorance of those who will tell you that you'll end up with a child who'll never grow up. Attempt to find the reality. It's worth it, I swear.

What I will also tell you is that I know of no better feeling than the love I have for my kid, the feeling I get when she laughs at my singing, the warmth of her hand in mine when she's reaching for something new she's not quite sure about, the pride I have in her when she trots out into the world, fearless and fierce, and makes that world hers. She is everything to me and her father. She is the coolest, most excellent person I have ever met and I doubt that'll ever change.

She is our love. In her I found the meaning of real, earth-shattering love. But only because she is mine.

May your life be as happy as ours.

Life just... is.

Modern Day Monstrosity

In the past few weeks I've been told that I'm a "pearl clutcher", that I should just "untwist my panties", and that I'm being "too sensitive" when I haven't felt that insults and belittling expressions, retard and tard, should have a place in our everyday conversations. I've also been called a "fucktard" for (politely) objecting to the word "douchetard".

Nice. I know. Makes me feel all warm and fuzzy about my fellow human beings. Yup. Makes me feel heard and appreciated as a person. And makes my kid feel like a valued member of a society that cares about her. Like she's loved and appreciated, and that she belongs. Makes her feel like a part of this great adventure, and not at all like a despised outsider.

Because someone thinks that saying fucktard will get him more laughs than saying fuckdink? Or because someone feels so strongly that the person they were ripped to pieces by needs to be called a douchetard and not ever a douchecanoe? Or because a person is so unimaginative that they cannot make a Palin joke any other way than referring to her as retarded?

What is this love affair with one word? Why are people so ready to defend their use of it? If you're out to insult someone, as seems to be a popular pastime, why not get creative? Why choose the one word, in any of its permutations, that singles out an entire group of people, a group that already has it pretty damn hard in today's society, and represents the members of that group as

mistakes
slow
broken
despicable
unfortunate
disgusting
strange
funny, but not the good kind
and
less than everyone else on this earth.

Because that is the long and short of it. It is language of oppression, hate, and discrimination. It is. It does not matter how much you are not pointing at my child when you use the word, you're still demeaning her, and others who have intellectual and developmental disabilities.

It does not matter that you also have a child with a disability but are not bothered by the words unless they are directed at your specific kid. You are aiding the language machine of inequality by not speaking up and attempting to make a change.

No matter how much we wish to do so immediately, the word 'retard(ed)' and its permutations cannot yet be understood as divorced from the concept of intellectual disability. A better case can be made for former classifications: idiot, moron, imbecile, but even they now carry added meaning, at least for this mother. There is no way for the parents to 'own' or 'take back' the offending word for their children. Someday, doing that may be possible for people with I/DDs, but as for now, they're not interested.

I know there are many things that need to be done and achieved for true equality. Things that require lobbying, funding, legislation, and hours upon hours of activism and advocacy. However, I also know that a change in our everyday language, and viewing certain types of language not as "free speech" but as language of oppression and hatred will help to undercut the persisting bias to see people with Down syndrome, or any intellectual disability as not quite human enough to be worth our trouble.

Again. I'm not asking for your money or even your time. I'm not asking for you to like me, or even be considerate of me. I'm not clutching my pearls in horror and asking you to stop swearing. I'm not being the "word police" or treading on your "rights". I'm asking for the tiniest, smallest speck of respect for a huge group of people. For your neighbor, that boy in your kid's school, your sister, your colleague, the driver behind you, that girl on Glee, and for a group of people that you might one day be a part of.  

This is not about my sensibilities.

Make a choice. Use language of equality. Teach your kids that language has power. Weigh your words. There may come a time someone needs to be called a giant bag of assholes, and that's just fine. Assholes won't mind. And people with intellectual disabilities will not be the butt.

My kid. Leading the charge.

I recant. Yes, it happens.

"So what do you do?"

"Oh, I, uh, parent. Yeah. I'm a mom."

Once she was born, everything else went out the window. I embarked on the greatest adventure of my life. After a half lifetime of touring the world and putting myself (and whoever was with me at the moment - hello and subsequent sorry, Viking husband) in situations that no Finn, especially one who doesn't know that opinions do not always have to be voiced out loud, or even hinted at with disapproving or otherwise eyebrows, should be putting themselves in, I became a mom.

To Babe. Who's like the bees knees, pixie dust, the bestest ever antidote to any mellow-harsh, and all of that cool stuff that I thought didn't even exist. She's the shizz and the sha-zam, and pretty much all the awesome magnificent I can think of. So ya, she's it.

Totally.

Before I had her I was one of those people who praised new moms for not letting the fact that they'd procreated change "who they were".

And I realize that is a capital offense.

Right. I apologize. I'm sorry. That's such a fucking nasty thing to assume or say. To think that what you are without children is the person you are, and should be, even after a life-altering event? I should have known better. I mean, I went about preaching how wonderful change is which just made a me a giant hypocrite. Apologies again, folks. Don't hate me. I understand now.

Of course the love of your life's going to rock you to your foundation. Change you for the better. Make you see the world in a new light, more than once each day, as a place that your sweet one will also exist and develop in. (Plug: Should you feel compelled to, now that I've apologized and everything, change the world for the better for my kid and for all people with Down syndrome, sign this petition, please.)

I now have a permanent ponytail for easiness, a back yard with actual grass and a sand box, and a red minivan with a top of the line car seat in the back seat. Rear-facing. Still. For ultimate safety.

And it's all still adventurous, and new, and something extraordinary. Every second of it.

So what I'm trying to say on this Mother's Day is that I apologize for being a childless jerk before. For not understanding that this change too that enables one to talk about poop (especially the rogue kind that makes its way into a shoe in the closet somehow), bedtime routines, and Caillou, and find those discussions fun and enjoyable (unless they're about Caillou and then the general sentiment seems to be that enuf is enuf already), is good change too.

It's not regression, or an insult to feminism. It's another adventure in a string of adventures that at least my life is made up of. Motherhood's the works, man.

Happy Mother's Day to all and all a good convo on poop.

'Twisting it out of wire' means you really should have gotten this by now

I have been struggling with a post about my everyday advocacy that would mention my hungry offspring, a jar of strawberry baby puffs, Doug Gansler, the Attorney General of Maryland, Sheriff Chuck Jenkins, a worthy petition, and a press release, all in one sentence.

Please click on the links and do the world (and my kid) a solid. Thanks.

But it's just not going to happen. There's something more pressing that's fighting its way out of my rambling mind to be put down in what will hopefully end up being a more coherent string of words than what I usually achieve.

Could happen? There's got to be a first for everything.

Today I wish to talk to you about making a change in the world. Not just how I go about it in my everyday (yup, still linking this to the Down Syndrome Uprising advocacy symposium), but how change truly happens, or actually, how I think we could be better at making it happen.

I'm looking at you, National Down Syndrome Society (NDSS), and you, National Down Syndrome Congress (NDSC).

This is what happens when you don't answer my mails. Just saying.

In order to make a change in the world we first have to identify what it is that we wish to change and then figure out how we can be the change we wish to see in the world.

Right? I'm sure I've seen stuff like that on a bunch of Facebook memes. Seed of truth and all that...

Totally. It is all about us. How we approach this. How we act in public. How we come across. The kind of example that we as parents, familiars and representatives set. And I'm pretty sure there are at least a few self-advocates out there who have strong convictions about how they like to be treated and talked about.

I'm sure we can all agree that the current perceptions about people with Down syndrome many folks out there have are hardly ideal. There's a lot of work to be done, sure. Lots of targeted education, legislation, and funding to deal with to make an actual change. I get that.

But I also get that we need to lead by example. We need to be the change. We need to think in a new way. We can't be bogged down by how the current society views people with Down syndrome and other intellectual disabilities.

We need to be different. We need to be advanced. We need to to think the way that we wish everyone thought. We need to stop apologizing and start taking charge. We need to be the change we wish to see.

NDSS and NDSC, I'm giving you the benefit of the doubt and will continue to believe that you actually wish for a change, although it's not exactly apparent in your behavior of late.

We need to talk the talk.

Language is key. We don't only wish for people to stop using the r-word, or Down syndrome as an insult, we wish to be so forward thinking that we get to equality with language.

We have to stop apologizing for the existence of people with Down syndrome, as if they were a population distinguishable by strange, specific to the syndrome, behaviors, and completely unknown health conditions that are never seen in the population at large.

We all, as in the people with Down syndrome and their parents, families and friends, know that there simply are no behaviors or health conditions that are purely found in relation to Down syndrome.

Maybe, and I'm just spitballing here, we should let the world in on this specific nugget of information? Maybe we shouldn't talk about "people with intellectuals [sic] and developmental disabilities who live in the community who often display language difficulties, unusual behavioral [sic] or an inability to react normally in an unusual situation." (my emphasis) or how our attention needs to be focused on training of law enforcement and first responders "on dealing with people who present the challenges faced by individuals with disabilities." We should maybe also steer clear of making people with Down syndrome out to be people "who may not respond in a way that the personnel are familiar with or have seen before." I mean, sometimes people react in ways that may be seen as unconventional, or unexpected, but that is a part of human contact and happens to all of us, not just people with disabilities. And again, seriously, I doubt that a person simply by virtue of having a disability can be so much more creative than the rest of us, that they will create a behavior, now in our time, that has never ever been seen before. My daughter's a wily little inventor alright, but even she has her limits.

Maybe it's just me, but I don't want to go out there and tell my surroundings: "Hey you, expect strange with my kid, cause, you know, she's abnormal and all."

I can't believe that I have to spell this out. In 2013. Sheesh.

I'd rather go out and be all like: "Hey you, I know you might not realize that my kid is just as human as you, but she is, so treat her like you'd want yourself or your loved ones to be treated. Understand that her reactions and actions have value and stem from the specific situation and her personality, not Down syndrome, and they don't require some specific procedure to be 'dealt' with. Be a human. Communicate with her."

To put it succinctly, as I've done in a number of unanswered emails to especially NDSC (since they are the organization behind most of the quotes above), we cannot use language or perpetuate images and thoughts that stigmatize and/or marginalize people we represent further.

We have to be forward-thinking. We need to be progressive. We need to see beyond the current reality, into the future, into what should and will be. We need to realize sooner than later that a person with Down syndrome having the right to be seen as an equal member of society should not be a radical idea.

We must not shoot ourselves in the back, or in the foot, or, well, anywhere. Actually, let's keep away from shooting, period.

Let's represent. Let's be cool and let's be the change we want to see in the world. Change begins with a thought. We have to fake it till we make it. If we build it, they will come.

Now.

Enough with the clichés already, let's do this!

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What If

If you are a parent you probably know how profoundly this thing we call love for our children also spells constant worry, guilt, fear, feelings of inadequacy, and holds close to its very core the terrifying potential for bottomless grief.

While parenting might mean eskimo kisses and early morning warm cuddles, drawings on the fridge, tiny participation awards on the mantle, soft sobs that only your arms can make disappear, intense pride and joy, laughter that plays a never-before-played chord, and boogers that kind of look like a dog (and that don't really gross you out), there are also desperate nightmares about college funds, meaningful time, birthday invitations and popularity, happiness, correct nutrition, homework, following dreams and what those dreams might turn out to be, scraped knees and elbows that could have been so much worse, turning out 'well', and much more, that often, especially late at night, can seem almost overwhelming.

But your laundry list of concerns that keep you up at night probably does not include the worry that your child will not be seen as fully human by their peers and by the society they are growing up in.

Unless your child is also part of a population that is marginalized and that there are widespread, so deeply ingrained and accepted prejudices about, that more often than not they're regarded as opinions, sometimes even as the truth. As evidenced by the comments to this post, which the person who runs this blog calls "opinions" and "valid discussion".

My child is often marginalized and dehumanized.

How does a person exist in a society as fully human, and as an equal when they are constantly told by everyone, even their own community, that they are part of a marginalized, yet homogenous group, a group of which blanket statements and assumptions can be made and spread as expertise?

Would that situation frighten you?

It frightens me.

The world at large seeing my child as somehow too different, defective, or less than keeps me up at night. It takes me away from my family in my need for tangible change while I read yet another article on Robert Ethan Saylor and plot a better tomorrow for everyone.

But that fear of her being taken away from me is never far either. After all, we've been close to that edge once already. That fear becomes even more pronounced, at times overriding the fear of my child not being seen as fully human, especially when something like what happened to Ethan happens.

A whole community of parents, loved ones, and people with Down syndrome is shaken. Shaken to the point where many feel like something needs to be done, this mother included.

So I understand the need to grab hold of anything that somehow seems like a solution. A powerful 'if only'. Something that just might tell a terrified parent that what happened to Ethan was an isolated incident and the result of something that is amiss, but that can be easily rectified.

'Down syndrome specific training' is born.

I applaud the community for attempting, for once, to come together to address this situation. I admire anyone's fierce passion for their children, I have much in store for mine. I understand the need to make everything better, to have a goal, and to make something positive came out of a horrifying sequence of events that never should have unfolded to begin with and that continue to haunt us because in lieu of an independent investigation there has only been an internal investigation. The need to make sure Ethan's death is not in vain resonates with me. I could never disagree with a parent's love for their child and their need for safety and security for that child.

But I have to look at the bigger picture. I have to look at the repercussions of the public discourse on Down syndrome specifically and intellectual and developmental disabilities more broadly. I have to look at this training, something I normally see as a positive, as education, within the scope of the constraining and limiting 'Down syndrome specific' epithet. I have to plot in how exclusion and separation from the general population by recommendations, protocol, or legislation will affect what I wish for my daughter and all people with Down syndrome - inclusion, acceptance and equality. I need to understand what happens to prejudices and stigma, while education and training on such, in reality truly specific subjects, as 'delays in processing' or 'heart conditions' are brought under the Down syndrome condition umbrella. I need to assess how detrimental such notion as having a "Down syndrome specific interaction" or addressing "specific health and behavioral concerns associated with people with Down syndrome" will be to perceptions of others regarding the individuality of a person with Down syndrome.

I need to be true to my heart and the one who calls me mom.

Exclusion by way of creating a standard that is separate for those with Down syndrome, if that were even possible for such a diverse population, is not the kind of legacy I wish to create for my daughter, or anyone with Down syndrome. I wish to create a legacy that challenges bias, stigma, and prejudice, and that celebrates diversity while understanding that Down syndrome in itself is not diversity but that diversity is born from individuality.

The only Down syndrome specific training that I can support is training that completely challenges the existence of anything 'Down syndrome specific' and focuses on people with Down syndrome as people, as individuals, as equal members of society with equal rights. That training I will champion.

Antidote

I don't want to write about Robert Ethan Saylor.

I don't want to write about how he cried for his mother right before he died. I don't want to write about how the people whose actions left him dead are already back at work protecting others, or selling another ticket to a movie, or looking back at that night when a life was lost while they did nothing because someone qualified was taking care of it, or because they were afraid ...of him? I don't want to write about how confused, biased, and embarrassingly void of thought, real research, and understanding the media coverage concerning his death, and his life, has been. I don't want to write about the deafening silence from those who get a salary for representing Ethan and all people with Down syndrome (never again paid by my daughter), and then, too late, filling that empty air with even emptier words. I don't want to write about agendas or people who can't come together even in death, and who bicker, or try to one-up each other in some strange game of 'Whose cause is this?', or people who look at their own child with Down syndrome and still see other, or people who don't see a problem with a police department investigating its own employees. I don't want to write about people who hide behind the anonymity of the internet to spew their venom on 'retards', unsuspecting parents, and at anyone who reads the comment section in a newspaper (you are scum and I feel sorry for you). I refuse to write just because if I don't, the Department of Justice might just think that this horror, this violation of basic human rights, this dismissal of 6 million people has blown over, because there have been some vague promises of 'training' for people, who are supposed to be protecting my daughter as an individual, on how to see her and the other 6 million exactly like her even more differently, as strangers in their own homes, as beings beyond comprehension by the simple power of common sense.

I don't want to. Ethan isn't the cause of this. He isn't to blame. Neither is his Down syndrome. The blame belongs on the shoulders of those whose actions led to Ethan suffocating to death, and on a society in which a person's life is instantly deemed to be of lesser value, less worth saving, dismissible, or to have a potentially dangerous, out-of-control component, when his assumed IQ score is below 70.

Society needs fixing. Those of you who look at Ethan or my kid and don't see a person, an equal, need fixing. Adjustment. Change. You don't get to judge my daughter, I get to judge you.

Successful communication is not an effortless task. Communication takes practice, patience, compassion, and a willingness to listen and to try to understand. Communication takes years and years to learn and even then, in any given situation, at any given time, communication might fail. Even with the best of intentions on all sides.

But what if the intention, the willingness to understand, is not there? What if, instead of seeing and listening to a person trying to communicate with you, all you see is a stereotype?

He isn't small? He isn't cute? He's not smiling either? There's no belly laugh. He's not happy. He's not contained. Where is his keeper? Why is he by himself? Who let him out? He's reacting. He won't understand anything but force. Not fit to be out in public. Those can't be words. They don't understand. They don't think. Did he just say 'mom'? Nah. Couldn't have. Retard strength. Better watch out. 

But what if you grew up having a friend who had Down syndrome? A student in your class? What if the lady who sells you your weekly lottery ticket and you regularly chat to had Down syndrome? What about a coworker, your boss? What if a kid in your daughter's soccer team had Down syndrome, in your son's ballet class, a guy in your aunt's book club, that lady who golfs with your sister-in-law? What if your favorite television show had a character with Down syndrome? How about the bartender at your favorite Friday-night watering hole? What if you had that Friday-night beer sitting by your friend who has Down syndrome, listening to his woman troubles or work stories, and telling him about this weird mole on your back, or how you think your car might not need all of those repairs the shop's quoting you for? What if we valued everyone, included everyone, and then let the chips fall where they may? What if we didn't assume anything, but looked at everyone as an individual?

What if people with Down syndrome really were included in every aspect of society? What if we all made an effort to understand, to communicate?

Simplistic? Maybe. A real choice? Yes.

Include. Interact. Accept. Embrace. All four are choices you can make. Today.

Natural

Let me open with the most important message that I am ever going to give to you. A message I will shout from the rooftops as long as I'm here on this earth. A message that fuels my advocacy and activism and allows for me to leave good intentions and acts of kindness that are really moments of pity or charity in the dust, fallen by the wayside with other outdated and faulty notions. A message that I believe in with every fiber of myself, and that guides my parenting, my relationships, and my being.

Disability is natural.

Down syndrome is natural.

Trisomy 21, or Down syndrome, is a frequently occurring genetic variant, highly viable with life, and something that simply, naturally occurs. Down syndrome is not the other. In a parallel life, you could have Down syndrome. In this very life, you could have very well been born with Down syndrome.

And that wouldn't make you unnatural, challenged, broken, or less than human. You would still be you.

Down syndrome does not need to be fixed or 'normalized'. It needs to be allowed to exist as something that is an acceptable and natural part of some people, our equals in everything, regardless of their perceived capabilities. Meeting milestones, or being highly functional (whatever the hell that means) is not 'winning' at Down syndrome, or at life. Living life, and having equal opportunity for the same experiences as everyone else is what life is all about.

You know, being human. Having rights and responsibilities, and being able to decide what to do with those rights, and whether to honor those responsibilities. And, facing the consequences.

On the 21st it is World Down Syndrome Day. A special day for celebration and awareness. This year there's some weirdness about wearing loud socks to raise awareness. An icebreaker for discussion? In all honesty, I don't really think either of us needs an icebreaker for awareness. We're evolving.

We need to take action.

You might have gleaned from my last post that simple awareness is no longer doing it for me. I know better now. There is a need for acceptance. There is a need for action. A need to level the playing field. To make every single classroom inclusive in spirit and in space. To remove having Down syndrome as a negative in a college or a job applicant, as is being done in the case of race, gender, and sexual orientation. A need to embrace everyone's uniqueness and individuality without there being some who are 'more different' than others. A need to stop using language - and not just the word retard(ed), but suffers from, is inflicted with, a Down syndrome patient, a risk of Trisomy 21, them - that degrades, demeans, marginalizes and dehumanizes those with intellectual disabilities. A need to focus on how exactly Down syndrome and those with Down syndrome are portrayed and represented in the media. Unfair and biased portrayals, as well as fluff pieces that utilize those with I/DDs for inspirational feel-good in the mainstream need to be publicly denounced.

We need to actively advocate for acceptance and inclusion, even if it means alienating people who are uncomfortable with having their worldview challenged.

We need active acceptance and inclusion, not just passive awareness. We need active involvement by everyone, everywhere, not just slactivism by adding partial visibility with a click, or a smile, or a token birthday invitation. We need a community where admission is not only by a chromosome count, either way.

You don't have to love someone with 47 chromosomes to understand, you just have to be human.

There MUST be an organization that barks up and makes a terrifying stink every time someone in the media, in medicine, in legislation, in the public eye, anywhere in the world, gaffes. Be it the r-word or a homicide swept under the rug. There must be an organization that ensures that there are repercussions for marginalizing acts, for drawing on stereotypes, for exclusion, for dehumanization by language. There must be anger and outrage that leads to shifts in attitude and to organized action. Instead of intentions, we need to focus on consequences, on what is, not what was intended.

We need to stop accepting crumbs, in the fear that if we don't, we might not be 'liked'. 

Why, hello there REVOLUTION. You're needed now.

People with Down syndrome are not defective. Society is defective.

Yet. This is not about legislation, or about funding, or about research. This is about attitudes. This is about human rights.

And the question of who counts as human.

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