Saturday, March 10, 2012

What is this "Normal" of Which You Speak?

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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.

Therapy Corner
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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Added to the 'Define Normal' Blog Hop! Find out more @ Just Bring the Chocolate

10 comments :

  1. Thanks for sharing this, which I hopped to as part of Defining Normal. I love your writing.

    Like you I see myself as fortunate - my son has learning and communication disabilities, so no tubes or wires, no wheels, no equipment. We have nothing like the level of additional things that many other special needs parents I know consider normal. And yet other parents ("normal parents"?) see my life as not normal and hard. It just feels normal to me!

    But stuff! We have so much stuff. piles of paperwork that I will one day file (unless they're so out of date that by then I can shred them!), toys, appointments cards, pictures, washing to be put away...

    ReplyDelete
    Replies
    1. Thank you very much. Ooooh, we have stuff. I look at it as the price for how much love and happiness we have.

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  2. i'm still here... with your crazy normal squared - loving your writing!

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  3. You write so entertainingly. Glad I’m not the only one that struggled to define what made us unique. Your family sound delightful. Looking forward to reading further posts.
    By the way, I too have sciatica so you have my heartfelt sympathies there!

    ReplyDelete
    Replies
    1. :) Thanks. I don't say things are a pain in the neck; rather they are a pain in the back.

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  4. Loved it - cheers for sharing your normal with us! You're right by trying so g=hard to be 'normal' we forget what make us special in the first place x

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  5. I relate to your not being like most families, too - in the same way that you adapted as your family's needs changed, and that my Hubby was a stay at home dad for 11yrs.

    You might want to read my product review of the Bumbo seat. Click on my name &scroll.down.to.the post.

    Agree w/others - enjoy your writing.

    ReplyDelete

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