Wednesday, January 30, 2013

I'll Have the Coffee

In the nascent early morning rumblings of my head yesterday, several things collided and suddenly made sense.  That's usually the way things go;  in these days of toddler wrangling-full time nursey-bloggy-exhausted-fire putting out-ness, it's amazing that I can find two neurons to rub together.  It is never a full out Oprah "A-ha!" moment or a mad dash to the keyboard to hopefully catch the ideas that are pouring out my ears, but rather a mild "humph" that may or may not be audible as I shufflewobble downstairs to 'make the Tassimo go'.

You have to understand that my thought processes, when not consumed by my daily responsibilities are generally allowed to wander free range.  I read a lot; and I read a lot online.  Many things can pique my interest in the course of a day, so it's not surprising when a few of them float to the surface first thing in the morning, like the answer in a Magic 8 ball.  Instead of "signs point to yes" this particular morning, while I shook out the cobwebs, I got "I'll have the coffee".

Let me explain...

Monday, I came across yet another example of the "singularity" of Down syndrome.  By this, I mean that the general public, as a whole, has a perception of people with DS that is somewhere around 30 to 80 years out of date.  Yes, I am generalizing here, but there are a great many people that look at DS as deficient, sick, fearful or something to be despised. As an aside, this is why I get annoyed at the crestfallen and horrified looks I used to get when I told someone new about Wyatt having DS.  Last week, it was a family in Texas who did not want to sit near a child with Down syndrome in a restaurant.

This week, it is the Today Show and a fluffy segment on pre-natal testing.  I am sure it meant at one point to provide a balanced view, but managed instead to convey some very thinly veiled biases.  The test is presented as the first of it's kind (it isn't) and much safer and less invasive than CVS (Chrorionic Villus Sampling) and amniocentesis.  It certainly is, but so were the other first line blood tests that we have been using for years.  In the segment, an affluent, attractive 'older' couple is featured taking the test after proclaiming that [Down syndrome] "is one less thing to worry about".  Also noteworthy is that this test only screens for Trisomy 13, 18 and 21, not the other myriad of genetic issues that could occur.  The woman is 35 and described to be in a higher risk category. (By her age alone, she has a 1:385 chance, actually).  Not surprisingly, the couple reveals that they are "safe" later on and neatly steps around what their decision would have been if the test had proven otherwise.

The show also uses an "expert", a doctor who uses outdated and paternalistic terminology ("Down's baby") and states that this bloodtest "... allows people to really think, what’s the realistic expectation of this pregnancy and what does my life look like with this new baby?"  I guess this information will have to come from personal research as she did not explain how exactly this was supposed to happen and no examples or resources were offered.  Finally, the whole thing is glossed over by focusing on the 'bonus' gift of this test: the baby's sex can be discovered weeks earlier than using 'traditional methods'.

Nowhere does it mention that DS can happen to any age mother, or what less affluent people who potentially cannot afford the $2000 USD price tag (that may or may not be covered by private insurance) will do or what social ramifications or possible further stigmatization they might face because of this.  There is also no mention how a positive result would have been handled in the doctor's office.  Sadly, the subject itself is worth so much more than a fluff piece ending with a happy, affluent "safe" couple opening a giant present to reveal to the world that their unborn baby is a boy (and how delighted they are at this news).  We wonder how, in this day and age, a person could be so hateful to demand to not sit in the booth next to a boy who looks a little different.  Yet, we continue to ignore how stereotypes of Down syndrome are perpetuated in media and popular culture, even subtly.  I continuously find these things frustrating and disheartening.

Also this week...

I ran into a blog that asked why there were so few blogs about older people with DS.  The author (who I do respect a great deal), suggests that it is because parents "get over" Down syndrome and find that they don't have a lot to talk about.  Or, it's a generational/technical divide.  I will buy the technology angle to a certain degree, but I'm not so sure I agree with the former.  I'm sure there is a lot of initial enthusiasm about writing and making a difference when you first have a child with a little extra, much like the first week of January finds a lot of people sweating away at the gym with conviction.  As time goes on, those people start to fall by the wayside.  That's because most bloggers, by nature, are not writers, just like the January folk at the gym are not athletes.  Life gets in the way too;  as kids get older, you actually have less time, not more, with activities and therapies and the like.  Skills are not learned at a furious rate, like in the early years.  I'd put forth time as a better obstacle to blogging than "getting over" Down syndrome.  I'd also hesitate to discourage new parents from setting up blogging-shop;  I've learned a great deal from the stories of new parents, especially those that have occurred a decade or so apart. Those parents of adults with DS, in a lot of cases have continued their advocacy, just not in this format.  There are also more than a few self-advocacy blogs popping up here and there.  The idea that the parents of young children with DS make all the noise, while the older, wiser parents just quietly get on with life is a little insulting, frankly.   I may not have the track record to prove it yet (other than two years of publishing at least weekly), but I plan to be here for quite some time.  These kind of things irk me as well.  There is so much division in the Down syndrome "community".  Pro-choice, pro-life, pro-test, anti-test, pro-homeschooling, pro-inclusion, pro-religion, athiesim, science... Often heatedly discussed.  How can the general public take us seriously when we can't offer the same courtesy to each other?

The answer, it seems, came to me in the form of another FB find.  A friend shared the following story and I shared it on the Facebook page on Sunday.  I've since researched it a bit and the story has changed a bit here and there... sometimes it's a wise grandmother, sometimes a father.  Regardless, the anonymously penned story goes something like this;
A young woman went to her grandmother and told her about her life and how things were so hard for her. She did not know how she was going to make it and wanted to give up. She was tired of fighting and struggling. It seemed as one problem was solved a new one arose.

Her grandmother took her to the kitchen. She filled three pots with water. In the first, she placed carrots, in the second she placed eggs and the last she placed ground coffee beans. She let them sit and boil without saying a word.

In about twenty minutes she turned off the burners. She fished the carrots out and placed them in a bowl. She pulled the eggs out and placed them in a bowl. Then she ladled the coffee out and placed it in a bowl. Turning to her granddaughter, she asked, "Tell me what do you see?"

"Carrots, eggs, and coffee," she replied.

She brought her closer and asked her to feel the carrots. She did and noted that they got soft.She then asked her to take an egg and break it.

After pulling off the shell, she observed the hard-boiled egg.

Finally, she asked her to sip the coffee. The granddaughter smiled, as she tasted its rich aroma. The granddaughter then asked. "What's the point,grandmother?"

Her grandmother explained that each of these objects had faced the same adversity--boiling water--but each reacted differently.

The carrot went in strong, hard and unrelenting. However after being subjected to the boiling water, it softened and became weak. The egg had been fragile. Its thin outer shell had protected its liquid interior. But, after sitting through the boiling water, its inside became hardened.

The ground coffee beans were unique, however. After they were in the boiling water they had changed the water.

"Which are you?" she asked her granddaughter.

"When adversity knocks on your door, how do you respond? Are you a carrot, an egg, or a coffee bean?"

Think of this: Which am I?

Am I the carrot that seems strong, but with pain and adversity, do I wilt and become soft and lose my strength?

Am I the egg that starts with a malleable heart, but changes with the heat? Did I have a fluid spirit, but after a death, a breakup, a financial hardship or some other trial, have I become hardened and stiff?

Does my shell look the same, but on the inside am I bitter and tough with a stiff spirit and a hardened heart?

Or am I like the coffee bean? The bean actually changes the hot water, the very circumstance that brings the pain. When the water gets hot, it releases the fragrance and flavor. If you are like the bean, when things are at their worst, you get better and change the situation around you.

I posted that quote originally as it resonated deeply with me.  I've been through many personal trials and at various times have come out the other side being the egg or the carrot.  I see it every day in life, in my work, in my family.  You either are hardened and have limited uses, or become very soft and easily destroyed.  When it has come to Team Logan, specifically Wyatt and his Down syndrome, I changed my tactics:  I became determined to be the coffee bean and change my environment.  I think I did that, through this blog, through my page, through my group.  I created something that others could enjoy at the same time.  And hey, we're talking about coffee for heaven's sake.

So, yesterday morning, as I puddled around and tried to make sense of what I had experienced and the things that were bugging me, I chose the coffee, both literally and figuratively.  Instead of passively allowing stereotypes to continue, I was more determined to speak out.  Instead of dividing a community, I am more determined to help build a unified one.  

If we want change, we have to be the change, as the old saw goes.  We have to continue to speak out against the use of the R-word, to change the stereotype of the 'kid who won't amount to much'.  The only way to do this is to work together, not to try and outshout each other.  We have to realize that we are doing this not just for our kids, but for all the ones that come after as well.  

I'll have the coffee.   I'm going to need the energy, methinks.

Down Syndrome Uprising.  Join the Revolution!
Drop by.  Join the Revolution.

[Originally appeared on Down Wit Dat

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.

Sunday, January 20, 2013

Down Syndrome Uprising –

I am not a “Mommy Blogger”. I write social commentary. I liken myself to a modern day Erma Bombeck – except we rent and no one knows who I am. And, oh, yea, we have a kid who happens to have Down syndrome, And, we are totally cool with that.
I have been writing about our family since April of 2010. My intention has always been to honor who our son is (not who he isn’t) and whenever possible to bust my husband’s balls. 
Lately, though I have come to realize I also need to write about this anger that rises up inside me when it comes to how our world treats people with Down syndrome.
I have created a FaceBook initiative, “Down Syndrome Uprising”. The intent of this page is to facilitate a dialogue about what we can do to elevate the understanding of people with Down syndrome. This page is not just for parents of children with Down syndrome. It is for anyone who believes the acceptance of all human beings is essential.
If is Erma Bombeck-like observations on what is “typical” or “normal” then Down Syndrome Uprising is Angela Davis-like benevolent militancy.
My initial title for the FB page had been a reprise of Milton Glaser’s iconic re-brand of New York City offering the simplicity of I LOVE NY except with a Sarah Silverman Twist – ‘I Fucking Love People With Down Syndrome’.
My friend Dawn, a therapist/coach/teacher, told me “As much as I love you I don’t want the word “fucking” on my FB feed. What about “Effing”?” Dawn is if anything practical.
But, back to me loving Down syndrome. To me loving what is. Not what isn’t.
I grew up in Wisconsin. I come from Norwegian-stock. We have long limbs, strong bones, an enthusiasm that doesn’t really have good boundaries and an acceptance of ‘what is’.
To give you an example my mother received the diagnosis of breast cancer three years ago and had a mastectomy. She describes it this way, “I’m lucky I had the good kind of breast cancer.”
OK, I’ll bite, “What’s the good kind, Mom?”
The kind where you don’t die.”
So, believe me when I tell you “I love my son’s Down syndrome”. Not loving it means not loving part of who he is.
Unfortunately not everyone is from Wisconsin so I find most people hate Down syndrome.
In fact we have historically hated Down syndrome and people with it. From the 1700′s to the 1970′s we alternately starved them to death, placed them in insane asylums and otherwise institutionalized them. By the 1980′s we were just refusing them medical treatment – like food and heart surgeries -that resulted in a life expectancy of about 25 years of age.
Then in some sort of crazy Darwinian-time-folding-in-on-it-self-way when we realized with DE-institutionalization, proper medical attention and appropriate services they could not just survive in our cold little world they could succeed. With the cruelest of irony this discovery came at about the same time as another – genetic testing advanced to the degree we could identify Ds prenatally. Since then we have been aborting over 90% of them.
Eliminating them from the face of the earth is portrayed as a good thing. Like, “Thank goodness we can test for it and get rid of it.” This was literally being said, by the Surgeon General of the United States back when Hillary’s husband was becoming a cigar aficionado.
And yet, ask a mother or father of a child with Down syndrome how they feel about their child. Actually, ask anyone who knows a person with Down syndrome. And – most importantly, ask someone with Down syndrome how they feel about being wiped off the face of the earth.
People with Down syndrome have been done dirty by bad PR. If Ds had Phillip Morris’s – sorry, Altria’s – money, we could hire Don Draper. But we don’t and Don Draper doesn’t exist. It’s up to us.
Us is anyone of you that believe as I do we cannot abide a world that wants to rid the world of people with Down syndrome.
I don’t have all the answers. This merely my opening salvo. My ‘call to arms’.
I envision this page to be a place where we create an unfolding manifesto of acceptance and love for people with Down syndrome.
It is not a place to talk about what isn’t. Let us start from “Our world has people with Down syndrome – that’s a good thing”.
Uprising Ds style
Uprising Ds style.
Let us talk about what could be. How can we get others to love and accept people with Down syndrome?
The way forward?
I cannot do this alone. I invite you to join me on Down Syndrome Uprising.
Welcome to the revolution.

Saturday, January 19, 2013

Down Syndrome Uprising

Welcome to Down syndrome Uprising. This place is for the sharing of thoughts, ideas, passions and the creation of a unified, global community of Down syndrome activists.

The intention of this page is to incite an on-going conversation about embracing people with Down syndrome in our world. This is a place for self-advocates, for advocates and those who care to learn more about DS.

We are one voice, yet many, speaking out to ensure that those born with Down syndrome are represented and treated fairly in society.

Let's talk.