What is this "Normal" of Which You Speak?

Today is Saturday, a unique breed amongst the other days.  To many, it's the first day in their two days of respite from the rat race.  To me, a shiftworker, it's just another day.  Today, in fact, is day four of nine, where I am supposed to be cleaning the basement and the stairs.  Since my sciatica has been ranging from cripplingly painful to moderately bastardly in the last week, we can safely assume that isn't happening today.  Instead I will blog...

Today's entry is made possible by my shiny new 'puter which came about solely because my other "laptop" decided to wink out and not display anything any more.  I say "laptop", as any sort of illusion that this thing was in any way portable had long since died out.  In the six years that it had been in almost constant service, we had first witnessed the demise of the battery which forced it to be plugged in at all times.  My then three year old son decided to play with it one day and in the space of 2 seconds had managed to rip off the "S" key.  It then became permanently tethered to both the wall and a desk as we had to plug in an external keyboard.  It has been moved from the basement to the bedroom and finally to the living room with the advent of the twins.  Where it sat, for many months, wheezing along with an external drive in situ, which kindly did all its major remembering for it.  Now, *poof*. It is blind.  Unfortunately, I have a whole whack of things on there that I did not back up and need to get off there before we either relegate it to the recycle centre or rebuild it for our son.  Yes, the same one that ripped off the S key.  The irony is strong with that one.

Saturdays have taken on another meaning for me;  Special Saturdays.  Those familiar with Twitter lingo will recognize #CT (Charity Tuesday) #FF (Follow Friday) and the like.  The special need community has started another: #specialsaturday, in the hopes of raising awareness.  This week's topic is technology:  how much Team Logan relies on their technology was highlighted this week with the "laptop".  Not only is it a much needed source of respite and an outlet for me, but it is also the hub of the house.  (Thank goodness it is back...)

My bloggy friend Renata over at Just Bring the Chocolate has come up with what I think is a brilliant way to spend a Saturday.  Unlike your typical blog hop, where participants jump from one to another to get to know other bloggers, she's added a twist.  A challenge, if you will.  Instead of dumping my URL and running ... er... trying to put your best face forward or whatever it is that you do, this time, there's work involved.  Renata has challenged us to "redefine normal".  I love this concept.  Love it.  In her words:

"There is no such thing as the normal family, just varying degrees of weirdness. Just like the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day, after a while, we don't even see our own idiosyncrasies. Parents of special needs children, arguably, embrace this weirdness to a more impressive level than many other families, and, should you come across us, you shouldn't be surprised if some of it leaks out into everyday life."

Oh yeah.

We've always been a bit "off".  Even before children, my husband and I were geeks.  We are, what I like to refer to as "delightfully eccentric".  We read a lot.  We know a little about a lot of different topics.  I am creative without actually being an artist of any sort of description.  When our eldest was born, we just incorporated one more into our weird little herd.  Quinn, as it turns out, is really smart, funny, sensitive and really into arts and crafts.  If that kid ever figures out what he is really good at, he is going to be rich.

We amped up the oddity factor when I conceived our twins.  Rare in itself, having twins brings on its own set of unique problems and creative solutions.  We've adapted behaviours for survival.  When one of those twins turned out to have special needs, there was a whole other level of urgency added to "adapt or be destroyed".

To prove Renata's theory that we overlook our idiosyncracies, I had a really hard time coming up with one little thing that makes us unique (since we have adapted everything quite well into everyday life).
I have been very fortunate that other than one surgery thus far with my "typical" twin, we haven't had to do much extra with Wyatt's Down Syndrome medically, other than go to a ridiculous amount of appointments.  By "ridiculous" I mean "mind bogglingly insane amount" as both kids have their own issues that require attention.  As they were 6 weeks premature, Zoe is followed by the neonatal clinic at the hospital.  We have a couple of appointments a year there as they evaluate her development.  She also has a Family Doctor, a Pediatrician and a Surgeon (who repaired her hernia).  Wyatt, so far, has the following:  a family doctor, a cardiologist, a cardiac surgeon, a pediatrician, an ophthalmologist, an ENT, an audiologist, a speech therapist and OT/RT/PT.  My kids need an assistant, which has handily come in the form of their stay at home Dad, another unusual thing about our family, when you get right down to it.  But, I don't think of these things, I only consider ourselves as fortunate as there are no tubes and wires with Wyatt; we have been spared the onset of CHF with his AVSD so far.  There have been no medications to give (other than mineral oil in his ears).  We have been "lucky".

Furthering her concept along, I was wandering around the house doing this and that and trying to come up with what made us different;  as I was doing this, I kept having to rearrange, pick up or sort out piles of stuff.  In our house, "the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day" is literally just that.  Piles and piles of stuff.  We have piles and piles of extra things that parents of singletons, special needs or not, simply do not have to cope with.  For example, our main floor consists of a large eat-in kitchen and a combination living and dining room.  Since Wyatt and Zoe have come into our lives, I no longer have a living-dining room; rather I have an area with couches and a main floor nursery.  The table has been moved out, creating an open area for the kids to roll around and play in.  There is a play pen in there at all times, a ready "penalty box" or soft place to put sleepy little people.  In front of our antique sewing machine, there lives what I like to call our "therapy corner";  a collection of items used for Wyatt's daily PT that have either been adapted for the cause or brought for that purpose.

Our regular readers will recognize The Bean and The Speedbump.  Along with these are (left to right):  2 nursing pillows, a stack of pillows, two "banana" neck stabilizers, an infant anti-rolling brace thing, a rain stick, a blow up roller with balls inside, two Bumbos, two stuffed friends, a yellow happy face ball, a beaded wire toy that suctions to the floor, an infant head rest pillow, the safety mirror,  a tambourine, the gymini-jillikers, a spare bathtub and two Sleep Number bolster pillows.

Any or all toys can be commandeered for the cause at any time:  we have four baskets that are about 1 foot cubed, full of baby toys that are jammed under the coffee table.  Stuff.  We has it.

Team Logan is nothing if not adaptable.  It's "do or do not. There is no try".  Renata has brought a good point forward:  in all our trying to show inclusion, to show our "normalcy", we've started to overlook the little things that make us, us.  We've forgotten what it was to incorporate every adaptation into our routine and as a result, minimize the hard work that we do.  Along with inclusion, I think we have to celebrate that too.  We do work hard.  We don't want to lose sight of that, even if it is a labour of love.  We have our little quirks too.  So, time allowing, I will be participating in the "Define Normal" bloghop.  Once a week, we should have a time to reflect on our little peculiarities, to embrace our differences with a little whimsy.

...And lettin' our freak flag fly, baby.

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Don't forget to vote for Down Wit Dat as About.com's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.  -Jxox

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There's That Word Again...

Today marks a special day of sorts.  It is not a birthday or an anniversary.  It is not a reason to break out the best glasses and pour the bubbly.  It is not the type of day where everything just seems brighter.

In a way, today is a day that I wish did not have to exist.

Today is a day of action and of awareness.  Today is 3-7-12, the day chosen to "Spread the Word to End the Word".

The word in question here, is "The R Word" or "retarded".  It is a word that means many things to so many people.  To people like my son Wyatt who have learning disabilities, it has a whole other set of meanings that you may not be aware of.

It is a word that, not surprisingly, disappeared from my vocabulary when we learned of the high probability that my unborn son had a chromosomal disorder.  It is a word that I had used, many times in my life to mean many different things, stemming all the way back to childhood.  I saw this word like any other word, in the sense that it is the individual that gave it power.  Although I had never used this word to harm one who was "less fortunate" than myself, I felt myself entitled to sling it from the hip like any other.  I used it freely, much like the cuss words that I regularly weave together for the amusement of my friends and family. 

I stopped using this word.  I stopped using this word initially out of respect for my son.  As our lives have progressed, I have realized that I stopped using it out of respect for others, for those that have gone before... and also out of respect for myself as a mother and a human being.  I have realized its true face and it is a monster.

The main issue is the continued casual use of "retarded". I understand that it may be difficult to connect the dots between bullying a "retarded kid", to calling yourself the same thing when you lose your car keys.  Or describing your dog's behaviour when he is chasing his tail.  Or any number of silly little things that may happen to you in the course of the day.  It's this use of the word "retarded" that I wish to address.

The word "retarded" did, yes, originally come from a medical context.  It is still used in places like mental health, not to describe those with a learning disability, but rather to describe a "slowing", as in the phrase "psychomotor retardation" (an acute mental health symptom to describe halting or sluggish functioning).  It was originally used as a blanket description for those with an "intellectual impairment", a permanent condition.  Wyatt, if born 20 years ago, would have been referred to by this term by his physician. If born in Europe less than 80 years ago, he would have been killed at birth, forcibly sterilized or been starved or gassed to death as "unfit" for life because of this term.

Like many other words in the English language (that shall remain nameless), that word was changed and became to mean many more things.  It became interchangeable for "stupid" and "silly" and "defective" and "ill conceived" and "not thought out" and a plethora of other definitions.  It also became a symbol of hatred, of mockery and of shame.  Shameful for parents who had borne such a child.  Hatred for abusers and mockery for those that bore the brunt of the abuse, many of whom could not defend themselves or possibly comprehend what was happening to them (which made them even more accessible as targets).  Understand too, that these are the times when people with learning disabilities were locked away and forgotten, allowed to rot in institutions without stimulation and without encouragement.  There was no in-home OT, there was no nourishing of the mind or spirit.  They were not allowed to develop, they were not allowed to achieve their potential.  They were discarded.  Like human garbage.

Times have changed, yes.  Luckily we have evolved and educated ourselves to not pick on those who are differently-abled.  At least in polite company, we do not use this term any more.

However, human nature being what it is, we don't like being told what to do.  Most people have no context; they don't know anyone with a learning disability.  Many people see this as "one more word that I cannot use" at the very least and "censorship" at most.  This fosters resentment.  I dig that.  I understand that because, once again, I am new at this special needs parent thing.  I understand as I used that word to mean many of those things up until about a year and a half ago. 

Spread the Word to End the Word and the day to day efforts of so many is not the embodiment of a group of parents (or the government, or whomever you picture) wagging their fingers at you telling you that you cannot do something.   It's not that paternalistic.

It's about people like Wyatt.

Whether you wish to admit it or not, it is about Wyatt and people like him.  Yes, you are not directly pointing at and making fun of a child with learning disabilities.  You are not throwing my son to the ground.  You are not torturing or starving him to death.

What you are doing is using the language of those who would (or have in the past).

When you use the word "retarded", you are using an antiquated word that, unfortunately has come to symbolize the struggle of people with learning disabilities.  You are using the language of the bully, you are using the language of the abuser.  You are using the language of those who hurt... and you are using it to describe your new bank fees.  When you do this, you are not only being offensive in the most literal definition, you are also being demeaning in the most literal sense of that word.  You are attributing (for example) my son's daily struggle to learn to eat, to learn to sit, to learn to read, to learn to speak, to your own inability to grasp your company's new vacation policy or what you think of some new rule in your kid's soccer league.

More often than not, it seems that people use this word to describe things that they themselves don't understand or find too complicated. There is irony here.

I have been told that I am "out of line" for asking people to not use the R-Word.  I have been called selfish, blind, misguided, oversensitive and foolish.  Oh yes, and the R-word itself, again just for irony's sake.  I have been told "it's just a joke" and I have been called a "fascist". (Once again, this is what fascists do to people with disabilities.) People "don't mean it that way" and when they use the word, somehow it is supposed to be transformed into something different.  Like making candy floss or sawing a lady in half.  Unfortunately, in reality, it's still just smoke and mirrors. All you've managed to do is show me how you can Bedazzle a turd.

It's not cool when those around me do it.  It's not cool when Hollywood does it.  I'm now going to do something that I rarely do:  eat my words.  Once upon a time, when this was all fresh and new and I was determined to be the "cool" parent of a kid with Down Syndrome and not be the word police, I said something that I now wish I hadn't.  I said that I did not believe that using this word in familial company or in an agreed safe place (such as among friends) was wrong.  I even joked that we were reclaiming this word.  We were going to take it back. 

I was wrong.  It is never okay.  (Chomp, chomp...)

When I have the rare moment to actually sit down to a movie or a TV show, I , like everyone else, want to be entertained.  For a block of time, I want to escape my reality.  I want to suspend my disbelief.  What I don't want, is to be dragged back into a reality where people "have fun" at the expense of others, just to get a cheap laugh.  Learning disabilities are not a punchline.

Maybe you think this is my problem or I am being "too sensitive", let me ask you this:  what if we change that word to "gay".  Or the N-word. Pick your slur, one that is used to degrade and demean a group of people. Not only is it not funny anymore, but I'm betting that there is a group of people out there, like a GLAAD or an NAACP who will tell you exactly how unfunny it really is.

Unfortunately, Wyatt doesn't have a group like that.  People with learning disabilities don't really have a watchdog champion. Those with Down Syndrome especially, being such a physically visible group, are considered, by some, "safe" for ridicule. Check YouTube, if you don't believe me.  After all, a guy with Down Syndrome isn't going to really ever be a police officer, right?  A person with Down Syndrome is probably never going to run a multi-billion dollar corporation or make sure you get your government assistance.  People with Down Syndrome probably won't be in charge of hiring or firing you in the near future.  There are less and less people born with DS these days too.  So, what's to lose?

I understand this is an argument that I am never going to win.  I understand there will always be bigotry and always be ignorance.  I understand, some can't grasp this concept and will blithely continue on.  You understand I will call you on your use of this word. You understand it's not okay and I consider you intelligent enough to know better.  You understand, you and your ilk will have no place in my life.

Bigotry, in any form, has no place in my world.  "Everyone does it", "it's just a word", "I don't mean it that way" are simply not acceptable.  Not any more.

There will be those that disagree, there will be those that get mad.  Feel free to un-friend, stop reading, whatever it is you do.  Before you go, stop for a second and ask yourself why you are feeling this way.  Honestly.  If you look deep enough you may find an answer that surprises you.  You may find a little guilt.  You may find that you know you are doing something wrong;  You may find that you are actually mad at yourself.

There's a couple other R words that I would rather see used:  Responsibility and Respect.  Responsibility for one's own words and actions... Respect for all.

"Retarded" is a constant reminder of struggle that thousands of families, including my own face on a daily basis.  It is a constant reminder that there are some very cruel people in this world.  One day I will have to explain to Wyatt's twin and older brother why it is that some ignorant kid (with even more ignorant parents) called their brother a horrible name or started a fight over Wyatt. I will one day, have to explain to Wyatt what cruelty is. What makes people do hateful things, why they must make others feel horrible so that they can feel better about themselves. Why they teach their children that such behaviour is okay.

But not today.  Not in the immediate future.  I have children to raise as happy, healthy, productive and caring members of society.  For now, that ugliness will be locked firmly outside.  Outside Team Logan.  Outside our vocabulary.  I don't care how many groups I have to leave or TVs I have to turn off or products I will stop using.  It will be outside, in the cold and the dark and be forgotten.

Where it belongs.

Make today the first day.  Take the pledge.  Make the conscious decision to stop using a word (and it's many permutations) that hurts those that certainly do not deserve it.  Do it for Wyatt, do it for yourself.

End the Word.

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Don't forget to vote for Down Wit Dat as About.com's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.

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