Down Syndrome and Birthdays

Looking at the searches that have lead people to this blog is an adventure.  Some are hits – each time I see a search about prenatal diagnosis I give myself a mental high five.  Some are misses – “natural garden images” for my Welcome to Holland analysis.  Some surprise me – I’ve had multiple views of my post from Adelle’s birthday for searches relating to celebrating birthdays of people with Down syndrome.  That post doesn’t address the topic at all and, honestly, I never would have thought about addressing this topic because sometimes I forget about Before Meredith.

Before Meredith was nice.   She tried to do the right thing.  She didn’t want to offend anyone or hurt any feelings – to the extent that she avoided situations or people that might cause either of those things to happen.

I can imagine her flipping through the mail while walking up the driveway from the mailbox, smiling a little at a small colorful envelope addressed to Brady, obviously carrying an invitation from a friend.  I can imagine her reading the glossy photo invite over his shoulder, happy that he has been included in this celebration by a little classmate.  The who, when, and where listed next to a smiling picture of a little boy or girl with Down syndrome in the shape of a balloon or a birthday cake, colorful cartoon confetti splashed all over the background.  That picture would morph Before Meredith’s smile into an anxious frown.  Later, she would carefully Google “Down syndrome birthday”, for the perfect “Down syndrome gift” so as not to offend the poor “Down syndrome child” or “Down syndrome parents.” Then, on the day of the party, she would drop her son off with his brightly decorated gift, to play games and eat cake, and she would cross her fingers that the gift was correct and be proud that her son had a friend with a disability – big parenting pat on the back. Yeah!

It would be easy for the person I am now to get angry at Before Meredith.  There is so much injustice in the world when it comes to people with disabilities.  It can be overwhelmingly heart breaking.  Before Meredith is a convenient (although not fair) scapegoat.  Before Meredith doesn’t know many people with disabilities.  But I know what is in her heart, because I was her.  Her heart is mine, with less experience.  Her mind is open.  She is looking for the right answer.  So here it is:

A child with Down syndrome is a child first.  They would probably appreciate whatever fad is popular with children in their class.  Feel free to ask what they are interested in when you call in your RSVP, or let your child choose the gift.  A birthday with Down syndrome is the same as a birthday without Down syndrome.  Just like any other child, a child with Down syndrome will care more about having friends at their party than the gift brought with the friend.

The same goes for any other situation for people with Down syndrome.  They are people first.  Down syndrome is something they have, not who they are.  Down syndrome does not make someone all that different from anyone else.  To Before Meredith I say: Don’t be afraid of saying or doing the wrong thing.  Don’t worry about what you don’t understand.  Put yourself out there.  Ask Now Meredith.  She would be happy to answer your questions and you will be better because of what you learn.

photo credit: chambanamoms.com

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Liebster Award: The Currency of Social Media

My next Liebster qualifying query asks: “Where is the value in social media and how do you fit into that role?”

I googled this, and found a lot of articles about marketing. I guess, if you are measuring value in only a monetary sense, that applies.

When I read the question though, I assumed it was about the value of social media to society. I think that’s a safe assumption considering it was posed by Bright Blue Line, which is definitely focused more on societal values than financial.

The most valuable aspect of social media is that it is revolutionary. It is a new and entirely different form of accessible communication. Social Media allows anyone to enact change. We saw it during the Egyptian Revolution. The R-word campaign owes a lot of it’s success to social media.

So far, this little blog has been viewed in SEVENTEEN countries. That a SAHM in West Michigan can be heard around the world is something no generation before ours has ever faced.  We have the opportunity to become a global community.

I’m still defining my role in social media, after all, I’ve just dipped my toe in. I hope my role will be, at the least, participant. I hope that I am one of many who will change the way people with Down syndrome are viewed. I hope that change in perception carries over to all people with disabilities, and then to all people. I hope that the medium allows us to meet and understand one another and to discover common ground. I know that I have already been changed by the people I have come to know through social media.

Photo credit: taolifestiudio.com

 

Liebster Award: Using My Powers For Good Instead of Evil

The first Liebster-qualifying question posed by Bright Blue Line, “What Inspired You To Start Blogging?” is addressed briefly on my “Get Down With Me” page. I’ll try to expand without boring you.

I’d like to preface this by saying that I am pro-choice. Whatever your position, I respect your right to your opinion and I expect the same from you. This post is NOT an invitation to debate that issue. I just don’t want what I say next to be misinterpreted as an argument for outlawing abortion. It is simply an argument for access to information.

Currently, 97% of pregnancies testing positive for Down syndrome are terminated. Ninety-seven percent. There are hundreds of thousands of people with Down syndrome living in the U.S., but most of those people are not part of that other three percent. Most people with Down syndrome were diagnosed after birth. All that is changing. There are now several tests on the market that can screen for Down syndrome earlier, more accurately, and less invasively than ever before. Easier, more efficient screening means more prenatal diagnoses – and more terminations.  This information was what pushed me out of my comfort zone and into the blogsphere.

I don’t have a problem with prenatal testing; I had prenatal testing. However, have you ever heard the phrase “knowing just enough to be dangerous?” It means a person has knowledge, but just enough knowledge to provide a false confidence, and not nearly enough to know all the possible consequences of their actions.  When medical professionals provide expectant parents with a diagnosis but no additional information about Down syndrome, they are really giving them just one piece of the information they need to make an educated decision. Prior to testing, my husband and I had discussed the possible outcomes and decided that we would not terminate the pregnancy if the baby had Down syndrome.  Yet, when I heard the diagnosis, my first instinct was to terminate because I didn’t know anything about Down syndrome. Like most people, I was afraid of the unknown.

I took to the internet, intent on informing myself before making such an important decision. I found a lot of statistics.  I found reports of all the medical problems that could affect a person with Down syndrome. I found a lot of outdated information. I found a lot of postings from other mothers and fathers looking for answers, just like me.  I did not find what I was looking for – What is it like to live with Down syndrome?  What does it take to raise a child with Down syndrome? Ultimately, thousands of families in the U.S. alone will be put in that same position each year.  I hope when they Google “Down syndrome diagnosis” my blog will pop up, along with the others that have started showing up on the web in the last few years. I hope that I am helping these families make an informed choice. I believe that some of them will choose to continue their pregnancies.  I am glad I did, and I think other families will feel the same.

Basically, I decided to use my powers for good instead of evil.

For now.

Photo credits: josavill.com, theidsc.org

Be An Ambassador For Social Evolution: All The Cool Kids Are Doing It

Every parent has that fiercely protective instinct. Mine makes me wrathfully stink-eye a small child at the mall play area because they pushed my pride and joy off the slide. It made me seriously consider locking my offspring in the house to guarantee safety from serial killers, pedophiles and bullies.  Even before Evelyn was born, this instinct kicked into overdrive. I was angry! I was angry at the children who would exclude my little peanut on the playground! I was furious with the elderly people who would assume she should be institutionalized! I was peeved with the everyday people who would experience discomfort at her proximity, or openly stare like she was some sort of circus side show attraction!  I had all sorts of preconceived notions and I was violently vindictive towards these hypothetical attackers who would dare hurt my child. I spent countless hours building an arsenal of angry rhetoric and biting replies to barrage these attackers before they even entered our lives.

After her arrival into this world, though, I experienced much less of this than I expected. The attacks I predicted, for the most part,  never came.  It took a while, but I began to relax. When I did, I realized what a toll all of that anger was taking on me. Constantly caught in a state of agitated readiness, waiting for attack – It was exhausting. I let my guard down and I began to enjoy my life again.

This isn’t to say that those things haven’t or won’t happen. They do, on occasion, and I’ve really had to look within myself for guidance in these situations. I have to remember before I had the pleasure of knowing Evelyn.

I always considered myself to be open minded. In hindsight, I see that was not the case. I couldn’t fully understand and accept what I had never experienced. Evelyn is capable, perceptive and loving – she is like any other child, in most ways. I now get that people with disabilities are just people. I don’t need to put them up on a pedestal and I certainly don’t need to pity them.  It’s hard for me to admit when I am wrong, but I was wrong.  I am ashamed of my previous thinking, and grateful that I have been shown the truth.

Unfortunately, I only gained this understanding from knowing someone with a disability. Our society doesn’t emphasize this side of disability – that people with disabilities are only people – no more, no less, and not much different from people without disabilities. I now realize that my anger was futile, but what else can I do?  As a society, we fall short.  How can one person change a whole society?

Honestly, most people mean well. I’m not talking about the Ann Coulters or the Rush Limaughs of the world (Relax – I don’t mean conservatives, I mean people who refuse to admit it’s wrong to use the slur “retard”), or the abusive educators or Eugenicists. I don’t refer to those who unapologetically choose hate. I am referring to the ignorant.

You see, in our society, ignorance has incorrectly taken on a negative connotation. To be ignorant is to simply not know. There is nothing wrong with not knowing, unless one is given the opportunity to learn and refuses. I don’t believe deliberate ignorance is the norm. On the contrary, most people are unintentionally ignorant – like me. There is so much I, myself, still have to learn; I certainly don’t want that held against me. I prefer for people to share their knowledge with me. I have an unquenchable thirst for understanding and I desire to grow as a person. I believe most people feel the same.

Then, how do I intend to alleviate ignorance? Simply by being not only an advocate for my daughter – but an ambassador, as well. To be both requires patience, thoughtfulness, and practice. I must calm that primordial, protective response and think before I speak. I am not, by nature, a “people person.” I am an introvert, but every day Evelyn and our family get out there, we provide an opportunity for society to see what life with Down syndrome is REALLY like. Every friend we make, every coworker, every person we come across is an opportunity to enact change.  Each Cub Scout meeting, trip to the grocery store, and playdate is a chance for people to get to know us and our family – to put a human face on disability. I don’t approach the afore mentioned situations as conflicts; I address them as opportunities. This change in prospective provides the  possibility to change the perception of my daughter which, in turn, improves her life. In order to accomplish that primeval goal of protecting her, I must quiet the instinctual response it inspires in me. If I am angry, aggressive, or admonishing, it will only serve to further alienate my audience by enforcing the perception that we are unalike. If I attack, they will defend.  Instead of encouraging an adversary, I prefer to establish an ally. If I am patient, gracious, and friendly, common ground can be found.

Undoubtedly, there are some people who take comfort in their ignorance. It provides a false sense of superiority and security. These people won’t be swayed by a smile and a few carefully chosen words, but an angry barrage of how-dare-you’s is equally ineffective.  I believe these people are the minority and  most people will respond in kind if they are approached with an open heart and mind.

Therefore, I have decided to let go of my anger and treat people how I would like to be treated – with respect, kindness, and empathy. It’s harder than stomping around in jackboots, threatening wrathful vengeance (and maybe a little less fun), but it just might be more effective. Perhaps the way to encourage respect, kindness and inclusion for my child is to kindly and respectfully include others in my life. Instead of waging a war for social revolution, I’m engaging others in the conversation that is social evolution.  I’ll let you know how it goes.

You can check out John Franklin Stephens, an amazing ambassador for social evolution, here. His ability to take the high road and speak thoughtfully and respectfully to someone who didn’t earn it is inspiring.