Down Syndrome: Finding Hope in Hurt

I was offended last weekend.  I walked into a coffee shop and struck up a conversation with an older gentleman who was putting stickers on the paper bags that you scoop coffee beans into.  Full disclosure: When I'm out in the community, I'm always looking for prospective jobs that Leanne, Josie, or another individual with special needs could do and that's what drew me to him.  We started chatting at his daughter walked up and introduced herself.  Somehow, in conversation, I told them that I was on my way to a special needs conference and the older man interjects "That's what I need!"  It was intended to be a self-depreciating joke but it obviously missed the mark on the audience.  The daughter awkwardly jabbed him in disapproval and I'm sure the look on my face was a very clear mixture of shock and disappointment, without so much of a glimmer of amusement at his attempt at humor.

I walked away bitterly thinking 'Well, Leanne will NOT be working there!' 

That one offensive little comment haunted me all day.  It kept playing in my head, over and over, to the point where I was mad at myself because I just couldn't let it go.  And here's the frustrating part: Leanne and Josie receive countless positive comments.  Everyday, they inspire, encourage, and amuse people.  They truly bless peoples' lives with their presence.  So when the reception to my sister and daughter is so overwhelmingly favorable, why is the one thoughtless, ignorant comment that stings the one I can't get out of my head?

Because I felt like this was having a negative impact on my psyche, I challenged myself to think of it differently.  I told Travis about the comment over dinner and he laughed out of shock at the gall of the old man and he found humor in the irony that the joke could not have been targeted to a more hostile audience.  I told Travis, "But otherwise, he seemed like a nice old man.  In fact, he probably would have liked Leanne if she worked there.  I bet he would have been very kind and patient with her.  He just hasn't had experience with people with special needs.  He doesn't know better because he never had a chance to learn - that's not his fault."  

It was still a conscientious effort to stifle the sting and force myself to try and view the situation with the benefit of the doubt and I was incredibly proud of myself for trying, because I knew holding on to the hurt wasn't doing me any favors.  

I believe so much has changed generationally to support inclusive attitudes towards individuals with special needs that this type of unintended ignorance is fading (this is me giving the gentleman the benefit of the doubt that his comment was not intended to be malicious or hurtful).  I believe that the kindergarteners in Josie's class will not grow up to make jokes like this.  I believe they will not grow up to say the "R" word.  They know Josie.  They know better.  In the era that this gentleman was educated, he certainly didn't have any children with special needs in his class - probably not even in the same school.  

Hubert Humphrey's (Vice President of the U.S. under Lyndon B. Johnson) granddaughter had Down syndrome.  I found an article written by Hubery Humphrey's wife, Muriel, in the Chicago Tribute written in 1971 about their granddaughter, Vicky.  Let me warn you: the outdated terminology is jarring.  But realize that it was 1971.  If you can wade through the terms that are now considered offensive and extract the heart of the article, you'll find that the Humphreys' desires for their granddaughter are very similar to what parents of children with special needs still want for our kids: to be accepted and appreciated exactly as they are.  

http://archives.chicagotribune.com/1971/07/11/page/136/article/mrs-hubert-humphrey-our-vicky-is-retarded

I challenge you to read the rest of the article, "Our Vicky is Retarded," (Cringe!  I know!) and find parallels in the sentiments expressed and the objectives that we, as advocates in the special needs community, still value.  At the end of the article, Muriel talks about how she was contacted by a new mother who had a baby with Down syndrome and the mother said that by seeing Vicky on TV and by hearing the Humphrey's message of appreciation and love for Vicky, that she was incredibly encouraged about her daughter's future.  That underscores the importance of our advocacy efforts.

There will always be uninformed people who make offensive remarks under the guise of humor, but with exposure an education, the next generation will be enlightened and more accepting and kind.  I truly believe this and I have so much hope for the positive change that we will continue to see.

Aunt Leanne Blogs: wish stay forever

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my

lap

top

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good

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lunch

and

dinner

get to

the

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them

take to

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class

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Social Media Pitfalls

When Confessions of the Chromosomally Enhanced started in 2010, it was a way to share photos an anecdotes with our family and friends who were spread out all over the nation.  Slowly, others began stumbling upon our blog and we started receiving really heartwarming feedback about how our family's story was a source of comfort for new parents who had just received a Down syndrome diagnosis.  Showcasing what a smart, competent, kind, funny, and loving young woman Leanne is offered a cool glimpse into the future for those parenting children with special needs who were unsure of what adulthood would hold.

The blog began to have a dual purpose: 1. a way for me to document memories 2. a way for us to advocate for individuals with special needs and hopefully create a more positive perception of what life with Down syndrome is really like.

Enter Instagram.  For those who don't know, Instagram is a quick and easy way to upload a photo or a short (60 seconds or less) video and add a brief caption.  I joke that Instagram killed the blog star (remember that song from the 80's "Video killed the radio star"??  Anyway, I date myself and digress...) because Instagram has made me all but abandon the blog.  Instagram is a lot faster and easier.  For the blog, I have to upload photos off of my camera and organize them by very specific filing parameters imposed by Mr. Technology (he's very laid back about everything so when something matters to him, like having an organized home network, I try and play along).  I edit the photos, upload them to the blog, and then sit down and draft thoughtful posts about specific topics relevant to Down syndrome.  Then, I edit said posts, wait a day or two, read it again...and then, maybe post it.  This requires a lot of uninterrupted "spare time," which is an elusive concept that evades this frazzled mother of 3 on a daily basis.

With Instagram, however, I use my phone to take a photo, click on the Instagram app, add a little caption, and within 30 seconds, the memory is stored.  I suspect that because I'm not the only one who struggles to find "spare time" to explore the blogosphere, Instagram has been soaring in popularity where as the blog doesn't see much action these days.  That, and the technology-induced ADHD that most of us are afflicted with lends itself to glancing at a small photo and 140 character caption over wading through paragraphs and paragraphs of narrative on a blog.  Am I right?!  

As fun and convenient as the Internet and social media are, they are not without pitfalls.  As many of you know, while our family does maintain a public profile and while we happily allow strangers to access our blog/Instagram account with the hopes that our story will help educate people about Down syndrome and shape a more welcoming and inclusive future for individuals with special needs, we try to follow basic Internet safety protocol.  There's no telling who is accessing this information.  I suspect the vast majority of people who stumble upon our blog and Instagram accounts are tax-paying, law-abiding, upstanding members of society.  But just in case, we guard our personal information closely.  We do not reveal our last name nor do we reveal where we live.  And even though we live in the social media "public eye," we are private about certain aspects of our lives.  

No, I will not tell you who I voted for in the presidential election.  

And things have been working out pretty well for us until recently.  Our Instagram account, @CatfishWithKetchup, was suddenly inundated with hundreds upon hundreds of new followers.  Many of the profiles contained content of a questionable nature.  I am not opposed to blocking an account if it is inappropriate, but they were coming in way too fast for me to block.  I literally do not have the time to check each profile.  After researching Instagram "spam," I realized that many of these accounts are designed to leave comments on my feed that are lewd or that encourage our followers to click on a link that will connect them to sketchy websites.  We have young children following our Instagram feed.  I am not okay with our profile being used to distribute inappropriate propaganda.  

So @CatfishWithKetchup is private for the time being.  

This post is designed to address the feedback I've received and to explain to those who are disappointed why this decision had to be made.  For those who have requested to follow, I will approve those requests as soon as I can, but realize I have to wade through a lot of questionable profiles in the mix.  Instagram was never intended to be a platform to promote and grow our "brand" or any sort of promotional tool.  It's just a place where one mom is storing her memories.  I'm happy to let other people access snippets of our lives if it helps make the world a more compassionate and receptive place for my children.  But we're not in the business of collecting followers; especially not if that comes with a price that harms others.  My foremost responsibility is to protect my children.  

Your patience and understanding while we sort through these challenges is greatly appreciated.  

Elizabeth 

Down Syndrome Awareness Month: Expectations vs. Reality

I realize that Down Syndrome Awareness Month is over as November has ushered in Adoption Awareness Month, but I recently received a question on Instagram and it was too good not to address.  

It came from Elaine, a dear friend of ours who has known Travis and I since we were newlyweds living in Southwest Florida.  Elaine worked with Travis and she and her husband, Colen, were also our neighbors.  We spent so many fun times visiting with them in their family room.  Colen was one of the most magnetic, hilarious, and wise individuals that I've ever met.  He lived a rich life and he had an incredibly entertaining story to share no matter what the conversation topic was.  Sadly, we lost Colen to cancer in 2007 but his memory will remain with Travis and I forever.  This post is dedicated to him.  Something tells me that he's looking down on this circus that Travis and I are living with great amusement and he's cackling at the antics that consume our days.  I also know that he's taking good care of our late dog, Lillian.  He always did.

QUESTION: Elizabeth, being familiar with your life story and your early plans to adopt a DS child, a question has often come to my mind.  Is the reality of raising Josie as you had expected?  If different, in what way?  Even though you grew up with a DS sister, what have you learned from raising a DS child?  It all seems to come so natural to you and I love that you keep your sense of humor through it all.

Attempting to address this question has exercised my brain to the point of fatigue!  My only sister, Leanne, has Down syndrome.  She is older than I am and I idolized her in the way that any little sister would.  Growing up in the special needs community, unbeknownst to me at the time, was my comfort zone.  I didn't realize how meaningful it was until I moved away from home for college. I missed my sister so much that I sought out opportunities to volunteer with individuals with special needs to attempt to fill the void in my life.  Being around individuals with various disabilities offered a refuge from the superficial rat race that often overwhelms us.  It was a celebratory environment without comparison or judgment.  I could be myself.  The emphasis wasn't on conformity but rather on celebrating the many attributes that make us all unique.

Fast forward to the decision to start a family and, as odd as it probably sounds to the typical person, it was natural to me to want to add a child with Down syndrome to our family.  That's all I wanted.  That's all I could envision.  And this came as no surprise to Travis.  He was completely on board.  

We know the rest of the story.  When I reflect back now on how the reality of raising a child with Down syndrome differs from my expectations, I think there have been a few realizations:  

1.  Health - Looking back, I was naive about the complexity of the health issues that we could potentially face.  Leanne was born with esophageal atresia but her health problems were mostly resolved by the time I was born.  Josie's VSD was diagnosed in utero so we knew this would require open heart surgery.  I spoke with cardiologists and researched the procedure beforehand.  It was a scary time but honestly, she healed quickly, and now, her heart gets great reports every time we see the cardiologist.  However, we did not know about Josie's respiratory issues.  We brought her home on oxygen but we thought that closing the hole(s) in her heart would fix the problem.  It turns out that Josie's lungs had problems of their own.  Because of what was later diagnosed as "chronic lung disease," Josie required oxygen, monitors, and multiple hospital stays.  The concern that aspirating the formula in her bottle was contributing to her poor lung function led to the placement of a G-tube.  Suddenly we had a very medically-complicated child.  

Not all children with Down syndrome have extensive health issues.  Some are born very healthy and others encounter more challenges than Josie has seen.  While I wasn't prepared to become an honorary medical professional overnight, I rose to the challenge because Josie is my daughter and I love her.  People can give birth to typically developing, healthy children that later encounter accidents or illness that require in-depth accommodations and care.  The foundation of parenthood is unconditional love; this means being willing to love and provide care for your child regardless of what the future holds.  I wasn't expecting it and I wasn't prepared for it, but I figured it out because that's what a mother does for her children.

2.  Perceptions - Growing up I idolized Leanne.  I loved being a part of the special needs community.  Josie is my dream come true (if you ask her, she'll tell you that because she's heard it a million times).  But it wasn't until I entered the special needs community as a parent, that I realized that not everyone shared my positive perception of Down syndrome.  When I started the blog and began stumbling upon other Down syndrome blogs, it was an eye-opening experience for me to realize that the journey to acceptance can be long and difficult for many parents.  What is my dream come true, is a devastating diagnosis for others.  And it's no wonder that people who haven't had the experience that I have had are left thinking that Down syndrome is a burdensome sentence for a family.  If the only information you've received is from a clinical perspective - well, my heart goes out to you.  Because there is so much more to Down syndrome than a medical pamphlet or quick Google search can offer.  So new parents: tear up the pamphlet and believe me when I tell you that you just hit the jackpot.  Welcome to #TheLuckyFew.

3.  Generational Changes - When I first started the blog in 2010, the subtitle was "Dual Downs Divas."  We always lovingly called Leanne the "Downs diva" so the alliteration seemed perfect.  It wasn't long before I was introduced to this idea of "People-First Language" (to read more, CLICK HERE).  It turns out that a term of endearment that our family found benign is actually very offensive to some.  What may seem like semantics "A diva with Down syndrome" vs. "Downs diva," is an important distinction these days because Leanne is not defined by her Down syndrome.  She is a person, first.  I apologize.  I grew up in a different generation.  I have nothing but love for the Down syndrome community and my failure to use people-first language was never intended to offend.  To this day, many people still say "Downs;" it's not uncommon to hear physicians say "Downs kids often have smaller sinus passages..." or something to that effect.  And it really doesn't bother me because I know that their intentions are pure.  But I will happily modify my language to avoid upsetting others.  

Just like the terminology, resources have also changed in the nearly 40 years since Leanne was born.  Our chromosomally enhanced kiddos are offered so much more in the way of interventions, therapies, medical care, and education.  The education perspective is HUGE for me and here's why: Leanne was educated in a special ed classroom in a separate wing of the building from her same-age peers.  The typically-developing kids were not allowed the opportunity to get to know Leanne.  A lack of exposure contributes to ignorance which gives birth to bias and prejudice.  This can be said for any minority group.  It's been illustrated time and again throughout history.  Today, Josie is in a "regular" kindergarten class with her typically developing peers.  And guess what - they LOVE her!  They excitedly greet her every day, they learn alongside one another, and they play together on the playground.  I'm sure they get to witness Josie's deficits and quirks as well, but because they've truly gotten to know Josie, they realize that there's so much more to her than her disability.  They look past her differences.  And in 20+ years when they're raising children of their own, I believe they'll raise an even more compassionate and accepting generation because they will say "I grew up with a little girl with Down syndrome and she was pretty cool."  Ignorance and bias are being replaced by a genuine appreciation for the value that individuals with Down syndrome bring to the world. 

So, what have I learned in raising a child with Down syndrome? 

I believe Leanne already taught and prepared me for the the important stuff about parenting Josie - the richness that she would bring to our lives.  She has a value beyond what superficial parameters of perfection can measure.  What I've learned in parenting is that this message needs to be SHARED.  I can't keep this goodness to myself.  In fact, I wish I could introduce my sister and daughter to everyone in the world.  I wish everyone could be embrace to the wonder of it all.  Truly.  I wish I could share this gift with everyone.  The world would be a enhanced immeasurably if the darkness of negativity and bias were illuminated by the true and pure beauty that their lives possess.