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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Happy Birthday, Babies!

A whole year has gone by. 

I'm still in shock at this realization.

One year ago today saw the beginning and the end of a lot of things.  One year ago brought us some harsh realities, packaged up into two bundles of joy.

Last year, my twins were born six weeks early.  Wyatt first, then his sister Zoe a few minutes later.  Wyatt weighed in at 4 lbs, 13oz, while Zoe was much smaller at 4lbs, 1oz.  Both had oodles of dark hair and the gossamer skin of prematurity.  Both had bright blue eyes.  You could tell right away that Zoe was going to be the spitting image of me.  To the medical staff at least, you could tell right away that Wyatt had Trisomy 21 or Down Syndrome. 

I was certain of his diagnosis as I looked over at his warmer a few moments after he was born.  Each baby had a team at his or her bedside, including a physician and several nurses.  Zoe's team was joyful;  there were jokes and occasional pauses in their work as they reflected on some nuance of my beautiful, yet feisty daughter.  Wyatt's team were a stark contrast.  They spoke in hushed, respectful tones as they worked on my son with efficient, businesslike hands. My husband jokes that my writing is often a string of homilies.  He's right.  This is the moment that began as I looked back and forth across the surgical suite, comparing and contrasting Team A and Team B as they saw to the needs of my newborn children.

Wyatt's cry at birth was different than Zoe's.  When he let forth the first breath of air that he had sucked into his tiny lungs, he sounded all the world like the newborns you hear on TV... only in short bursts. Zoe's pitiful wail would change shortly to the commanding screech she has now, but I did not hear her until after she had been totally suctioned out.  "She is the one that sounds abnormal", I remember thinking to myself.  "He sounds just fine to me."  I would later understand that she sounded like any other premature baby, but at the time, it gave me something to rationalize.  After the Neonatologist gave his awkward pronouncement,  they eventually brought Wyatt over, sleepily bundled up for me to see.  I gave him a quick peck before he was taken away by his procession of gowned attendants to the NICU.  "He doesn't look like he has it..."

Zoe was brought to me, mummified and scowling.  She was so tiny... so much smaller than her twin.  Even bundled up, she was still smaller than a football.  Zoe was too far away for me to kiss and I was about to ask for her to be brought closer when she was handed off to my husband and they too were whisked off to parts unknown.

"So small... So small.  Please be okay...  Please..."

I did not get to hold my children until the next day when I dragged myself and my IV pole almost the length of the hospital to the NICU.  After a night of lying half awake and in constant pain, I needed them and they needed me. Anyone that ever refers to a Caesarian section as "the easy way out" need only talk to me and hear the particulars about that walk.  My nurse was very concerned as I forced myself along... after all, we were supposed to be just dangling my legs over the end of the bed and here I was, on a mission, with my ass hanging out of a johnny gown.  She knew better than to stop me however, for at that moment, I would have crawled there over her broken body if that is what it took.

The babies were in separate isolettes and I visited each one in turn.  I was there for over three hours as my nurse came and went with a wheelchair, hoping to coax me back to my bed where I needed to rest.  The sad part was that I was resting;  the NICU, despite housing very sick babies, is the quietest place in the hospital.  The frequent spine-jarring announcements are hushed, the lights are muted and everyone talks in dulcet tones.  I spent a good while with each of them and examined Wyatt myself.  His ears were smaller and lower on his head and had a telltale fold.  His eyes were almond shaped with epicanthal folds.  His nose had barely a bridge and his face was flatter than hers.  His skull was shaped differently, being wider at the back and smaller at the front, giving the appearance of "points" on either side.  The back of his head was flattened and you could feel that his soft spot was open in a V to his eyebrows.  His hands, much to my delight, did not have a singer palmar crease and his toes did not appear to be parted with a sandal gap. Other than his heart, no other "abnormalities" were discussed.  "Maybe he's Mosaic... "  My husband came and finally convinced me to return and if not rest, eat.  Which I did, ravenously.

Flash forward a year and here we are.  My husband is in the kitchen putting stew in the crock pot and the kids are having great time playing together on the floor behind me.  Those fragile little humans are now thriving babies, who astound and delight us daily.  The only thing that has developed more in the last year is us.  Our thinking, our way of doing things.  There was a time where Wyatt's diagnosis would have meant something terrible.  (It isn't.)  There was a time where I would not have thought that I would have so much interest in genetic disorders and have time to make a difference.  (I do).  There was a time where it seemed that nothing was going to be right again.  (It didn't turn out like that at all).  There was a lot more born a year ago on this day than just these two babies:  Team Logan,  our network and support systems, our awareness, our desire to educate and advocate.  Two parents of a special needs child came into existence too.  We have all come so far.  It has been very difficult at times, of that I will not lie.  We've made therapy a casual everyday thing, something we can do while we play.  We make mealtimes fun.  We explore our world through the kids eyes, whether they be blue, brown or have Brushfield spots.  We love our son and embrace his differences just as much as we do his "sameness".

Today we celebrate many things along with the birth of our children.  Today will celebrate life and love.  We celebrate inclusion, we celebrate acceptance.  We celebrate strength and endurance.  Knowledge, education, awareness, advocacy... the list goes on and on. 

We celebrate new beginnings today. 

Happy Birthday, Wyatt and Zoe.  You are both perfect in every way.

You guys ROCK!

Postively New Year's

Here we are again; New Year's Eve.  It’s a time for reflection, a time for resolution.  It's a time where we look at where we've been and where we think we are going.  It's a time where the partitions between the past, present and the future are at their thinnest.  Despite all our shortcomings, despite what may have happened in the old year, it always seems that we are all on the cusp of something wondrous.

That's not to say that life is always neat and clean peachy-keen.  It isn't.  If you know anything about my life (and reading this blog, how could you not?), you will know that my world exists on a trade route that visits all stops.  My regular ports of call include Zen, right through to Hot Mess and straight on to Disaster, then back again once more.  This isn't due to a stroke of bad luck, a mental illness or even a gypsy curse.  It just is.  It's life.  Sometimes the wind is with you, sometimes it is not.  Sometimes it sucks.  Buy a helmet.

It's well known that my year has been all over the place.  I'm not going to go into that right now.  I will say that there have been a lot of points where life has sucked.  Big, giant, donkey balls kinda sucked.  There have been times where I have not known where to look, what to think or what to do next.  Those that know me well, know that this rarely happens.  There's always something I can do.  That comes from nursing; the ability to act quickly (whether right or wrong in the end), to come up with a plan and just GO. There have been times where I have lost my 'go'.  I don't do powerless or hopeless very well. 

My sense of humour, however dark, has seen me through those times.  My family;  my husband and my son and my (not so!) little babies have seen me through.  My friends, my extended family... all beacons in the storm.  I've employed all the old faithful coping mechanisms; Sarcasm and her edgy younger sister, Snark... food (especially chocolate!)... deep breathing and visualization, then finally research and blogging.  They have all helped, for better or for worse, in the end. 

What I found really surprising was how much having a positive outlook helped.  That sounds silly in a way, and superfluous in another.  I have told hundreds (if not thousands) of people in my career to be more positive, but really I'd never gotten the hang of it myself.  Sarcasm or something darker always won out.  Actively deciding one day to accept and overcome obstacles that I perceived to be in my path was one of the best things that I had ever done.  It gave me the ability to focus on learning more about my son's conditions, and ultimately, learn more about my son.  I was given the ability to see through his challenges and see HIM, not his Down syndrome.  See him... my boy, with the shining blue eyes, not the infant who can't sit up or has his mouth open most of the time or can't catch up to his twin sister.  Him.  Wyatt. 

It's not a matter of walking around with the proverbial "rose coloured glasses" or acting like what one family member has always referred to as "Doris Day".  It's not walking blindly in the sun, oblivious of the consequences.  Having a positive outlook is about knowing about life's little pitfalls, about accepting them and moving on.  It's about allowing you the ability to enjoy life; I mean to really enjoy it.  To see William Blake's "heaven in a grain of sand...", to see the potential in something, to be able to see in my mind's eye, my twins chasing each other around in the back yard like I dreamed of while I was pregnant.  Wyatt looks a little different now, he's a little clumsier than his sister and older brother, but he's there.  For the longest time I lost that little mental movie reel... happily I have found it again.  Instead of always being ready to fight, instead of always circling the wagons or assuming the stance or planning for disaster or whatever analogy you want to insert here, I'm approaching things a lot differently. My eyes are open, but so is my heart.

Negativity is like a cancer... it spreads, it metastasizes.  You can see it in the workplace; you can maybe see it in your own family.  The pain is there.  It does not go away.  It lingers and grows and eventually will wear down the strongest.  Every group has a "cheerleader"... after a while in a toxic environment; those pom-poms can seem awfully heavy.  Positivity is harder and it often isn't as fun.  It's hard to see the good in some things, it is difficult to maintain, but it too can spread, often like wildfire.  I was talking to my cousin about an inspirational link I had posted and she put forth the idea that in this day and age, people are so starved for good, for positivity, that they will react to the smallest amount.  We live in a world where sarcasm is the norm, where rejection is expected and when it doesn't occur, we end up in a momentary state of shock, unable to process what the hell just happened. That is sad.  In these crazy days, people need hope.  People need a little ember to warm their hands by, they need a little light in the dark.

I've realized in the last little while that providing information and a story that people can relate to is not enough.  I'm a not-so-new-anymore new special needs parent; what I've learned so far is that in those early days after Wyatt's diagnosis (and then birth), I craved positivity.  I needed to hear that things were going to be ok.  That I would breathe again without hesitation.  That I would have my happy family with my three little ones.  That I was strong enough…  That I could walk the walk, as it were.  I can.  I have.  I will. 

My New Year's resolutions have always been a bit of a joke.  This year... well, my list has a few new items.  Yes, losing weight is still on there, as is taking better care of myself, being more organized... New to the list are Inspire and Support and Educate.  I've been trying to do a lot of this since May, but I am going to continue in the New Year and in the years to come.  Love is on the list, has always been on the list, but only as a lurker, the ever present servant in the background.  She's a feature player now, as is her sister Compassion.

You can never be sure what is around the corner, but there is no sense cowering and no sense plotting and planning yourself to death.  Sometimes things just happen.  A little chromosome here, a little hole in the heart there.  Two for the price of one.  Life, all of it.  It's just life... you just have to decide whether you are going to live it, or mourn it.  I choose to live it, for as long and as well as I can. 

Happy New Year to you, my gentle reader.  May this year bring you inspiration, may it bring you joy.  May you too find your ember and may it warm your soul.

Happy Hallowe'en (31 for 21 Challenge, Day 31)

I'm going to forgo Medical Monday this week (I think I made up for it on Friday) and instead have "Mommy Monday".  I have tried to share as many pictures of my family as possible;  I firmly believe that inclusion is best accomplished through familiarity. Instead of a paper on Atrioventricular Septal Defect today, I'm going to instead post squeeful Hallowe'en pics of my twins.

Happy Hallowe'en!

Pumpykin Wyatt

I am NOT wearing this hat!

Pumpykins

Pweeze don't make me wear it

Wyatt

Zoe Kitty... sans hat

Twins

I am THE STAR of this pic!

Sad Pumpykins

Sweepy Pumpykins.  Night night.

Bon Appétit!

We're on day four of The New World Order here at Team Logan and there have already been quite a few changes.  The kitchen is getting overhauled.  The laundry is no longer "Mount Logan" but rather resembles a large burial mound (hopefully not mine).  Everyone is a little more relaxed and Wyatt and Zoe are now eating solid food.

Last week I mentioned that I was leery of starting the babies on cereal;  I was concerned that Wyatt's head was still a little unstable.  My hope was to wait another two weeks to be well beyond the "six weeks corrected" grace period that each of their milestones is given.  That grand plan lasted until Saturday afternoon after observing both of them watching me eat.  After trying to take food away from me (not a wise move for anyone, even my own offspring) they sat there salivating as I ate my brunch.  Their little eyes bored into me, their jaws were moving in time to mine.  Their little pink tongues were darting out of their half open mouths over seemingly parched lips.  It was creepy.  It was time.  It was more than time.  These babies were hungry!

I hadn't dug out our high chair yet so they were each plunked into a Bumbo.  Wyatt still has trouble sitting up straight in the Bumbo for periods of time, so we were on the clock (I have since set up the high chair for him in the kitchen that works much better).  I mixed up a batch of runny rice cereal according to the directions for  "first feeding" and went to town.

Not surprising, my babies like to eat.

I love this and you Mom!

Rice?  More like awesomesauce!

I couldn't remember any of the first feeding guidelines so I had to consult 'the experts' beforehand.  According to a few places, a baby's first feed should be somewhere around a tablespoon or two.  These two polished off 1/4 cup (or more) each and were upset that I wouldn't give them more.

Please Mom... can I have some more?

I swear, I had to count my fingers afterwards as I was afraid that I had lost a few.  They were snapping at the spoons like little sharks.  According to the aforementioned 'experts', I was also supposed to keep food to once a day.  It was apparent by the end of day two that 2 "solid food" meals were going to be needed as they were starving (they still start out with a full breastfeeding session prior).  Can we say "growth spurt"?  Now they get BF 4 times a day, 4 hours apart and at lunch and dinner they get solid food and a "top up" bottle at bedtime.

I had been looking everywhere for first feeding instructions for DS kids and found little that was useful.  There's a reason for that;  the instructions are no different than any other baby.  The main concerns are still head/neck development and swallowing ability.  Although Wyatt pushes a little food out with his tongue at times (because he is actually giving me his patented "raspberry of approval", not because of his glossal co-ordination), he has still taken to food pretty well.  He requires a little more "shaving" than his sister, but that is typical of a boy.  They like to wear their food.

We also have a new secret weapon this time:  Sean brought home The Baby Bullet.   I was skeptical at first, in fact the first time I saw the ads I remember thinking "how superfluous is that stupid thing?" (I used to have a vocabulary BT or "Before Twins").  I have a blender... yes it was a wedding present and therefore almost 14 years old, but it's still practically new (right?).  Except for the cereals, I made all of Quinn's baby food with it.  I would cook huge batches of things that were pureed according to his texture tolerance and frozen in ice cube trays (which I would then empty into labeled freezer bags).  It was a good system, it was healthy, it was cheaper... and it was a helluva mess.  I think I finally threw out the last of it a year ago.  This time I can make up one thing at a time, quickly and efficiently.  What really sold me on it was the milling head.  It never occurred to me to make my own cereals.  So I did.  This afternoon, I started with 1/2 a cup of brown rice and ended up 20 minutes later with enough ready made rice cereal to last us a week (if they ate at every meal).  I filled four of those wee containers (2 oz each) for the fridge and filled our freezer container (which is half the size of the one shown) and froze it for later.  It is awesome.  I still have a box of baby oatmeal cereal to start them on in a couple of days, but after that we are totally making everything ourselves. 

I could only be happier if I were full of squished sweet potatoes

I even used it to make the banana puree this afternoon.  We'll give it another chance, but thus far the verdict is split:  Wyatt is of the mind that I should immediately switch to having it "on tap" instead, while after a few bites Zoe decided that it was worthy of her best yucky face.  I'll mix it with a little rice cereal and maybe a bit of what is currently on tap and see what she thinks then.

Overall, both twins are doing well.  At their doctor visit yesterday they weighted in at 13 lbs 9.5 oz for Zoe and 13 lbs even for Wyatt.  That differential can totally be attributed to Zoe's muscle mass which continues to astounds me.  She is faster, stronger and way more agile than full-term Quinn at this age.  Wyatt is much improved as he is much less "floppy" than he used to be.  In fact, when we lift him up high into the air he is not as ragdoll like and more like superman.  He will also stand on his legs when held in a standing position, something that Quinn was totally against for a very long time.  To quote one of my girlfriends, Quinn's take was "Legs?  What are they good for?"  Wyatt seems to have his own way about things which is very much a delight to watch.

There was a chill in the air this morning;  I can almost smell winter coming.  The babies will be 7 months old tomorrow and I go back to work a week later.   Time is marching on.  With each new thing I am reminded that they will not be babies forever and this special time will be over for us soon.  As bittersweet as that is, it also represents all the new things headed our way.  New things that will be done first one way, then repeated slightly slower and differently. Done differently, done in the Down Syndrome way.  Wyatt's little extra brings a whole new flavour to our family table. One that many, incuding us, have never experienced before but are enjoying immensely.

Bon appétit!