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I mean that the general public, as a whole, has a perception of people with DS that is somewhere around 30 to 80 years out of date.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.

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  1. We are trying to do more as a parent of a teenager! I do not think you ever "get over it" Your kid is your kid.. You always want what is best for them. I also want more blogs about older kids, so I can learn too. I want to create the world I want to live in as well ( it will have coffee)

    What about after public school,college,living away from home, power of attorney vs guardianship, working... There are a ton of questions I want help with too, not just when is best to potty train or how to get a pincher grasp.

    One reason we do not post is the BUSY factor! As you mentioned, you do not get more time as they get older... Just like when you thought you were busy before the baby and realized you did not know what busy was... As a mom of three--18, 16 and 10 finding time to blog is difficult. 3 schools, 2 activities each, jobs, husband, house... finding time to surf is not so easy... I post on facebook because it is quick-easy, but trying to blog about something other may want to read is hard for me.

    The other reason is baby pictures are SO CUTE!! Even if I post about an older kid thing, I want to post picture of a toddler because they are adorable!! They get press.

    Working to blog more and inspire others, take a look at www.raiseExpectations and on facebook too.

    1. Thanks for your imput. I'm glad to see me instincts were right. I would love to hear more from you, especially since your children are older. Pop by our new facebook page "Down syndrome Uprising" (link above).

  2. Coffee wins, though personally I prefer chai, but same idea, change the water, love that!

    1. It's pretty elegant... and tasty. :) Thanks for the comment.
      (I'm an Earl Grey girl myself)

  3. No coffee without noise. New parent, self-advocate, a sibling, a mother to a teen, we need everyone.
    I agree, this feels right.

  4. I always chafe under the idea that I'm an 'advocate'... I consider myself just a father who wants what's best for his son. I realize there's plenty of overlap, but after a certain point I just want us to live our lives and step away from the DS community. I wonder if it's finding that balance point that leads to a certain ebb and flow in the online community.

    I haven't seen the Today Show piece (thought it's getting some attention), but what bugs me about mainstream media coverage of the newer non-invasive pre-natal tests is 1.) the glossing over of what the probable outcome of a positive result is (without judging or delving into the issue itself, let me at least use the word: ABORTION), and 2.) they NEVER discuss what the rates of failure for these tests are. A false negative (I know someone who this happened to) means a baby with DS when the parents were 'promised' a chromosomally typical one; a false positive means possibly terminating a chromosomally typical fetus. I doubt the producers of the test want that brought to light (think of the lawsuits!) but without bringing that up, there's no sense of balance or journalism or even reality (I know the chances of inaccurate results are extremely small, but anyone in the DS community knows that small chances are still very possible). I frown on conspiracy theories, but most media coverage of pre-natal tests feels almost like advertising for the product.

    In other news, my wife bought me a Bodum so I can make my own coffee at work.

    1. It's not for everyone Axel... we all have our own way of doing things. I never pictured this for myself either. However, to do what is best for my son, I feel that I must make a difference and speak out when and where I can.

      Honestly, I just want informed choice. The Materni21 test, as far as I know, is 99% accurate. Which means it fails 1% of the time. I would hope that there is some kind of counselling after a positive result and an indication of further testing, but I just don't know. I would like to see, in the event of a positive, families recieving proper, up to date information on DS. It is compatable with a very good life, thanks.

      As always, thanks for your input.

  5. I've always been a coffee fanatic--thanks for giving me another reason to be! The road is long, the road is hard--but made all the easier for the addition of other voices. Many voices, one amazingly loud 'RAWR!'. Thanks for another fantastic read <3

    1. You're more than welcome. Thanks for your very kind words.

  6. I think this is one of the best blogs I have read so far. Very inspirational and makes you think. I am a mother of two daughters, one who has down syndrome and no longer with us. It will be a year on 15 August 2013, but I chose to be an advocate on her behalf and hoping that when my first daughter is old enough to know what it is that she too will become an advocate for her sister.


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