Tuesday, July 31, 2012

In the News - July 2012

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of inclusion, of advocacy, of education, of hope and of love.  These are from the month of July.

AUDIOindicates an audio clip
APPEAL indicates an online petition or plea
BLOG indicates a blog post
EVENT indicates a scheduled event
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
THREAD indicates an online discussion thread
VIDEO indicates a video

Boy, Girl with Down Syndrome Chosen Prom King, Queen

Models wanted for Peterborough's Down's Sydrome exhibition

Torchbearers set to light up LBO land

Great Day for Down Syndrome Association
APPEAL Save Childrens Cardiac Surgery at the EMCHC at Glenfield Leicester
BLOG On Being a Down Syndrome Superstar

Carrie McLaren: Down syndrome not stopping my daughter Molly

Earlier Birth, at 37 Weeks, Is Best for Twins, Study Suggests

LINKS Welcome to Group Hug Apparel
I think Down syndrome is good

LINKSUnderstanding a Down Syndrome Diagnosis:  Our prenatal Down Syndrome Booklet is now digital.  And free.

Drug Shown to Improve Memory in Those With Down Syndrome
Stamford man with Down Syndrome reaches karate's pinnacle

The R-word. Not again?
Operation AV Canal
Paying it forward to the Down Syndrome Community

International adoption won't fix this problem.
APPEAL Disabled vet asks for public support, says airline workers kicked his service dog
13 chromosomal disorders you may not have heard of

LINKS Back to School with Down Syndrome

Mutations in Autism Susceptibility Gene Increase Risk in Boys

Samantha Brick admits that she would seriously consider aborting an IVF baby if she discovered that it had Down's Syndrome
1 Woman: 10 Questions – Hayley, Downs Side Up

Essex MPP recognizes outstanding citizens – awards Diamond Jubilee Medals

Children’s Book Offers Lesson About Down’s Syndrome
PHOTOS Life through the eyes of Christopher Diedo
Down's Syndrome no handicap for this award winner

Are we stumbling towards a society with no children being born with Down Syndrome?

Down syndrome researchers see hope for a pill to boost patients’ mental abilities
Erma Bombeck: Special Mothers

Language of Love: Twins with Down syndrome communicate with sign language while they learn to speak
The storm continues to rage around us

Second Olympian banned for offensive tweet

Down Wit Dat is featured in Apostrophe' Magazine's Summer issue as a Web Resource.  Check out page 12!

We had our fifth T-21 Blog Hop on July 21.  It was best turn out yet and I have decided to expand it permanently to three days from the original one!  (3 days for the third copy of chromosome 21.) Don't miss our next one on August 21.

Our Facebook page is now on the way to surpassing 800 fans in the next few days.  We've also started a monthly photo theme.  Post your photos and join in the fun.

Don't forget our Facebook Group!  Down Wit Dat - The Group is an all inclusive special needs discussion forum.  Join the conversation!

...And that's the news.  Keep the stories and information coming!

Friday, July 27, 2012


"Once upon a time, in a northern land, lived a Mommy and a Daddy.  They had a little boy who was the apple of their eyes.  As the little boy grew, they saw how lonely he was and wanted to give him a brother or a sister to play with. 

So, they tried.  They tried and they tried and they tried. But, no matter how hard they tried, they could not have a baby. This made the Mommy very sad as she wished she could have a baby with all her heart.  She wished it so hard that she could not stop thinking about it, day or night.  Even when she was eating dinner or playing with her boy, she was still wishing for a baby.  One night in the garden, she saw a falling star.  The Mommy squeezed her eyes shut really tight and wished for a baby as hard as she could.  As she made her wish, two more stars fell side by side, but she did not see this as her eyes were closed.  Her wish made, she went back in the house and went to bed.  That night, she slept the deepest sleep and dreamed of two dragonflies.

The next morning, the Mommy woke the Daddy up as she was crying for joy.  The wish had come true!  The Mommy was going to have a baby!  The Mommy and the Daddy laughed and clapped their hands with joy.  A little while later, they laughed and clapped again for they were told that they were going to have two babies!  One baby was a boy and the other was a girl.  The little boy was so happy, he could not stop talking about the babies to any one that he met.  He was going to get a brother AND a sister!

As there were two babies, the Mommy had to see many doctors. She was very puzzled to see that they all had long faces when talking about the babies.  They would hum and haw and and scratch their beards in thought as there was something different about the babies, but they couldn't quite put their finger on it.  One day, a month before the babies were born, the Mommy went to one last doctor.  They did many things and afterwards the doctor told the Mommy that her unborn baby boy was sick.  He had a heart with a hole in it and would be poorly all his life.  The Mommy was sad.  Very, very sad.  The Mommy cried big tears into the Daddy's shoulder while the Daddy would try to comfort her and not let her see how sad he was too.

Luckily, the Mommy was a healer.  She started reading everything she could find about poorly little babies with holes in their hearts.  She would read new books and old books and tomes that dated back to when the world was made.  Night and day she would read and read and read, until her eyes were sore and she got a headache.  Still, she kept reading.  She would tell the Daddy everything that she learned and he would sit by the fire and nod sagely.

Before dinner one day, the Mommy felt a sharp pain in her belly.  The babies were coming!  The Mommy and the Daddy raced to the hospital.  There was a lot of activity and whoosh!  The babies were here!  The attendants for the girl baby were bright and happy and laughed and danced at her perfect features.  The attendants for the boy baby were quiet and murmured in hushed tones as they shuffled with leaden feet.  Finally, one of the attendants came over to the Mommy and announced that her baby boy was sick.  He was in fact, poorly and did have a hole in his heart.  The Mommy however, was wise from all her reading.  "May I see my son?", she asked the attendant. 

When they brought her little baby boy over, the Mommy recognized him for what he was.  Yes, the little baby did have a hole in his heart.  However, being wise, she realized what many people did not.  That hole in his heart was just a keyhole, one that unlocked his little extra, which was in fact, a gift.  Instead of being poorly, her son was different.  You see, her little baby was given magic.

As time went on and both babies grew, it became more and more apparent how magic the little baby was.  He would laugh and the hearts of those that were with him were filled with joy.  The Mommy and the Daddy and the little boy were so happy with their new babies that they often laughed and clapped their hands in delight.  Despite what the doctors and the townspeople said, they knew the truth about their littlest boy.  In time, everyone realized how wonderful he was and they wanted to be near him always because he made them feel so good.  Surrounded by friends, the Mommy and the Daddy and the little boy and the twin boy and girl lived happily ever after.  The End."

Those of you that follow this blog and are familiar with our life will recognize parts of this story.  It is, in essence, the story of our children.  Some parts of this story are very real.  I do have baby twins, a boy and a girl.  I also have an older son who is the apple of our eye.  My son, baby B was born with Down syndrome and AVSD, a "hole" in the middle of his heart.  These are the facts of our situation;  obviously the rest of the above might as well be a children's bedtime story. 

Recently, a British 'journalist' has come out to say that if she found that her IVF pregnancy was positive for Down syndrome, she would terminate her pregnancy.  Good for her.  Both she and I live in places where we have that right to choose what we want to do in such situations.  That is not the issue here.  The problem lies with the comments that she made afterwards, including describing those with DS as a burden on society and medical resources.  To further upset the proverbial apple cart, she went on to say that she wished parents of children with Down syndrome (parents like me, for example) would stop "Disneyfying" the situation.  Essentially, adding a spoonful of sugar [coating] to make the medicine go down.

I'm sorry to break it to this person [who shall remain unnamed here, as she should not receive any more attention than she already has], or anyone else that feels this way, but there are no dancing candlesticks at my house.  There are no pirouetting sprites and no large mice trying to get me to use Mousketools on this blog, either.  Walt does not live here.

What does live here are poopy diapers, sore gums, lost sleep, a messy house and dirty laundry, just like every other family with three or more kids.  The only difference in my house is that one of the children is a little slower to develop than the others.  That isn't Disney either, that is fact.  Most of what this person states about children like my son however, belongs in the realm of myth.  There are many popular misconceptions about DS; unfortunately, instead of taking the time to educate and report the facts, she chooses to spin a few of the more popular pieces of fiction like so much yarn. 

For starters, I am sure you have heard the old adage that people with Down syndrome are "always happy".  They aren't.  People with Down syndrome have the same emotions as you and I.  They get hurt when people make fun of them.  They feel pain.  They get sad and feel loss, just like everyone else on the planet with any shred of empathy.   Another old saw is that all are "severely retarded" (to use an old, outdated and offensive turn of phrase).  The developmental delay in Down syndrome ranges from person to person, this is true, but most with DS fall into the mild to moderate range (which can also be affected by early intervention, good diet practices, etc).  In fact, most are totally integrated into regular schools and only have some classes with assistance or separately.  All are capable of learning, will walk and communicate (if not talk) and will live rewarding lives.  People with DS go to college.  People with DS get married.  If you have any doubt in your mind that people with Down syndrome will "amount to anything" as the saying goes, you only have to look to Tim, who runs his own restaurant in New Mexico.  How about the multi talented Sujit Desai, who plays more instruments than I can count?  How about actors like Lauren Potter that are household names?  My son will probably never be a doctor.  Guess what?  Neither will I and neither will most of the people reading this.

A scarier story is the angst ridden "What happens when I'm gone?".  Every responsible parent of every child asks this question at some point.  Being an older parent of young children, it does occur to me from time to time.  However, the approach to this is two fold:  understanding that there is a certain amount of things that you can plan for and accepting that sudden life events happen.  We can all, almost without exception, get hit by a bus tomorrow.  That is life.  As a parent, you have to bet that there are things that you really can't plan for.  You can also quite easily prepare for your expected death by setting up a special kind of trust fund, an absolute discretionary fund that will ensure that your child with special needs will be taken care of for the rest of their life.  It's really that simple.

As for the impact on the family, introducing a child with Down syndrome is pretty much like introducing any other child, right down to the "meet your new brother or sister".  Once again, I will point to the independent studies that show the positive impact a child with Down syndrome will have on a family.  I was told once, by a not so fairytale troll, that I will be miserable and my husband will leave me because of my son as 'no man' will be able to 'handle it'.  I am lucky to have a fabulous husband who, not only loves ALL his kids dearly, but he's made raising them his job.  Sean is a Stay-at-Home Dad.  He isn't perfect at his job and I don't know anyone who is.  However, he not-so-magically 'grew a pair' and stepped up for his family when we needed him most.  Not to take anything away from his efforts, but he is doing what he is supposed to do by being here for his family.  Sadly, yes, many fathers of children with special needs fly the coop.  I have met more than a few women in this position, who raise their children themselves as their former boyfriends/husbands go on to have other children that they do fawn over. It is a heartbreaking situation.  However let me make myself clear by saying that any parent who abandons their family, is a COWARD in my books, plain and simple.  Blaming it on an innocent child is even worse.

Life does tend to throw in some interesting plot devices now and again.  If there is one thing that my *cough* years as a nurse has taught me, is that nothing is a given.  It is fragile thing that is easily lost for seemingly no reason at all.  Drunk drivers happen, cancer happens.  The most perfect children with the most desirable traits are gone in an instant.  *Poof*.  Even sadder in a way are my mentally ill patients.  We have high school football stars with solid grades who one day, God starts 'talking' to.  Schizophrenia happens too,  so does drug and alcohol abuse, depression and suicide.  No child, regardless of their chromosome count at birth, is a sure thing. Parents aren't a sure thing either;  I see hundreds of teenagers a year who, having been given 'everything', run wild to get what they really want:  their parents attention.  Not attention from the babysitter, not their peers (who are the only people that they ever really form attachments with), but their parents.  There are also the 'throwaway' children too;  teenage children of families who don't fit into their parents schedules or new relationships.  When they become too much to handle, they are fobbed off on whoever:  relatives, the hospital, boarding school, the streets.  There are abused children, both physically and sexually that are so emotionally wounded that they may never heal.  Sadly, I wish I could rewrite most of these stories, but that is not in my power.

Lastly is the fabled medical expenses/burden on the medical system.  I'm Canadian.  This is not a problem for me.  If you live somewhere in the world without health care, I cannot comment on your situation.  Yes, I do take Wyatt to more doctor's appointments than the other two kids combined;  he will have to have open heart surgery at some time in the future. That is totally covered and I have no worries about the financial side of any of that.  Oddly enough, Ms. I'm-A-British-Journalist also has the benefit of universal health care, but I digress... In terms of anything he may have 'wrong' with him, his conditions are a) completely treatable and b) occur in the general population as well.   In fact, every 'disorder' that people with DS have occur in 'typical' people too.  They are also almost always treatable these days. What I can, quite comfortably comment on, is the 'burden to the system'.  As I have said, Wyatt will need some time in hospital, open heart surgery and checkups and preventative care.  Even if he develops diabetes and a few other things, his costs will be a drop in the bucket compared to those other children I mentioned earlier.  Who costs more in a lifetime?  My son, with Down syndrome, who will have a job and pay taxes?  Or the 30-something poly-substance abuser who turns tricks to get the next fix, is suicidal, aggressive, full of pneumonia, refuses treatment and is in the ER at least twice a month? I'll give you a spoiler:  it isn't the kid with DS.  Sadly, I, like many of my colleagues are slowly burning out as I see several of the other kind every single shift.

They say if you have met a child with Autism, you have met one child with Autism.  The same holds true with Down syndrome.  As that extra gene expresses itself in so many different ways, it is hard to say how this one or that one will turn out.  It's a gamble, just as much as whether or not my children would look like me or my husband.  That part is fact.  Life is also unpredictable.  Also fact.

However, what you choose to do if you find yourself in this position is your business.  If you want facts and a glimpse of what the future looks like, I and many other parent bloggers and activists out there, can help.  Aside from living with a child with DS, we also put a great deal of time and energy into making sure we have the latest information that will be the most useful.  We've all stumbled in the dark with this one... we want to make sure that no one else has to.  Trivializing and making a mockery of our efforts does nothing for anybody, including making yourself look like (more of) a jackass.  We do not "Disneyfy" Down syndrome, we do not live in a world of fantasy and delusion.  Down syndrome is a reality to us.  The prejudice and misunderstanding that we encounter on a daily basis is a fact.  This is not a world of dreams and wonder, this is a search for equal rights and opportunities.  This is a civil rights movement, in a world that is so permissively ableist that "Down syndrome" and "Retard" are still used in everyday dialogue to elicit a laugh.

When you become a parent, you will do anything for your child, even try to change the world.  I, and others like me, are trying to do just that.  I will not apologise for that.  I will also continue in my efforts to show that Down syndrome is not a terrible thing and that people with special needs just want the same things as other citizens.  Everything else is equivalent to a fairy tale, full of imaginary monsters and designed to scare parents.  There is a lot of love in this house,  there is a lot of joy and laughter and happiness.  If you want to spend some time with us, you too will see a wonderful little family that is everything that I can wish for. Down syndrome may not have been what we envisioned for our son initially, but he has it.  His extra chromosome may not have opened a whole new world of magic and wonder to us, but it has made us more open to new ideas, more humble, more aware of our actions.  It has made us better people,  it has made us better parents.  That is a fact, not fable.  What you do with your life is your business.  You may not want our life and that is fine.  However, you don't get to perpetuate myth and then accuse us of living in a dreamworld.  My life is not like my story at the beginning of this post.  This is not Disneyland.  This is Down syndrome land.  Ruefully, people like that British 'journalist' are still too small minded to go on any of our rides.

SWAN Blog Post Awards

Saturday, July 21, 2012

Golden Years

"Don't let me hear you say life's taking you nowhere, angel
Come get up my baby
Look at that sky, life's begun
Nights are warm and the days are young
Come get up my baby..."
-- David Bowie, Golden Years

I know I run the risk of sounding like a broken record as I keep repeating the following, but the passage of time completely confounds me some most days.  We've recently passed the babies 17th month "birthday" and the whole concept has me completely arse-over-teakettle.  It can't possibly be almost a year and a half since I beheld their fragility (literally) in the palm of my hand.  But here they are, my twin toddlers.  As time flows ever forward, they continue to make a splash, both in the pool and wherever they go.

My confusion is only compounded by the hours I keep, I am sure.  Although I know I work two 12 hour days followed by two 12 hour nights, for some reason, I think of that block of time as only two days.  I can keep track of the date, of the days of the week that I work, but in my head and as far as my body is concerned it is only two.  Possibly due to the pattern of "2 and 2", who knows?  In any event, what I think of as 'two days' is actually four days that I am out of commission as far as my family is concerned (five, if you count that the last day is dopey-stunned-sleepy day).  It is no wonder that it seems that the kids' heights have shot up overnight or that I am frequently taken aback by some new feat that I am assured by their father that has been occurring for some time now.

It's still surprising somehow that in my slightly out-of-time bubble, each day seems to bring new developments and skills.  Wyatt can now get just about anywhere he wants with a combination of commando crawling, pivoting, rolling and inch worming.  With the help of his worker from ICDSP we are trying to get him to crawl on all fours. He can put himself on his knees as I often find him actually sleeping in a knee-chest position and once put in this position he is quite comfortable to stay that way for some time.  It's just a matter of him doing routinely and finally making the connection that knees make for faster movement.  When that happens, you can bet that he will not stop.  You can almost watch the muscles in his legs developing;  what were skinny chicken legs a scant few months ago are now fleshed out and now match his little dimpled Popeye arms.

You can see how far he's come in the short videos that I shot of them in the pool the other day.  When I first plunked him in the chest high water (that was way deeper than any bath that he has ever had previously) he had difficulty with buoyancy.  First his one leg floated up, then his other and at one point I had to grab him to keep him from tipping over into the water and going under.  Within a few minutes he was holding on to the side for support and a few minutes after that he was confidently sitting in the water by himself, splashing away.  He had to correct himself a few times, but managed to keep himself from a dunking.  Both babies were having so much fun that I had to almost forcibly remove them as they were shivering, despite a Humidex of over 40 degrees Celsius. 

There have been changes in their diet as well.  Both babies seem to be weaning themselves off breastfeeding, although very sl-ooooo-wly.  The last two months have seen it reduced from every meal to morning-noon-night, to morning and night and now to just morning.  I guess I'm still the best part of waking up.  I thought we were completely done two days ago, but by yesterday morning, they were ready to go. It's been a bit of an emotional experience for me, fueled, I'm sure, by my fluctuating hormones.  Don't get me wrong... I don't really enjoy the whole thing.  Although it is a special bonding time with me and the babies (and is important as it is my time), I wouldn't call it pleasurable at this point.  Both have teeth and Wyatt right now is using his (with worrying skills that would be the envy of most puppies) at every oppourtunity.  Zoe learned quite quickly that nibbles meant a flick in the nose but her brother learns differently.  I don't use the same technique on him as the first time I did it, he completely lost it and wouldn't stop crying for what seemed like hours.  I've changed my tactics, but it seems now that he's almost afraid to nurse as I will look sternly at him and whisper (often through gritted teeth) "No biting!"  I guess morning hunger overrides the need to chew, but that bittersweet countdown has started.  It will mean more freedom for me, to be sure.  It also means the very end of my childbearing and "baby years" and I am going to allow myself the luxury of grieving that.  There will still be toilet training and drinking from cups and all sorts of exciting things in the wind but that sweet baby newness is gone.  Babies are both tiny and vast at the same time;  although they are small and vulnerable, they also seem to have a connection to the cycle of life and the universe.  Breastfeeding to me has always represented a link to that, a tether to the Infinite.  This part of motherhood is closing to me now, to the sound of happy dancing feet and toddler laughter.  As I walk into this new chapter with my children in hand, I cannot help but wistfully look back.  There is no turning around as I am getting old, but I can't help one last glance. 

Somewhere in my melancholy I realized that we are also approaching a new round of appointments.  Included in this is one with the cardiologist in August.  Hopefully we can get a definitive answer to what is going on with Wyatt's heart and what we will be doing about it, if anything, in the near future.  I'm hoping one way or another to end our period of "watchful waiting" as my friend Renata calls it over at Just Bring the Chocolate.   Many mothers of children with health and developmental issues will recognize this state, the constant evaluation of this one aspect or this particular miniscule behaviour or symptom or thing... and what the possible ramifications could be.  Watchful waiting... I like that.  Since Wyatt's birth I have, both consciously and subconsciously been waiting for the other shoe to drop, as it were. In this case, the shoe is a hob nailed boot that lands squarely in my chest.  Is he tired as he did not nap long or is he tired as he is not getting the oxygen he needs?  Is that cough because he has just gotten a noseful of dust from poking around at the edge of the couch or is he going into CHF?  The other day, to my horror, I discovered that his lips and tongue were blue.  I could feel my panic rising as I laid him on his back and started a head to toe on him, only to discover that a) his lips and tongue were not blue, but dark green and b) he had eaten a small discarded piece of paper from one of his big brothers numerous craft adventures.  Indeed, I found the offending wad still lodged in his palate and his grin faded as I swabbed it out with my index finger.  He looked at me as if to say "whyfore you steal my gum, mom?", while the entire time I am trying not to have a stroke.  Crisis over, we go back to usual patterns of subconscious surveillance and assessment.  Watchful waiting.  Yes, exactly.  I may never be able to completely turn it off, as it burns mental RAM quietly in the background, but I dream of a day where I can turn its settings down several notches.

There have been a few new behaviors from Wyatt that seem sensory related.  Not too long ago I threw some frozen broccoli and cauliflower into the Baby Bullet to hopefully chop them up for lunch.  Normally I process cooked veggies, but my (incorrect) thinking that day was that they would be chopped into pieces if left frozen, instead of rendered to puree.  As I was discovering my error, I looked over at Wyatt who was frantically wailing with a terrified look on his face.  He listens to the blender all the time,  in fact both kids react to the blender the way most pets react to the electric can opener:  Yay!  Lunch!  This time I guess the sound was slightly different and more random-ly clatter-y and he lost his mind over it.  A similar experience happened the other day when he picked up a piece of scrambled egg that was a little too warm.  It wasn't hot, but it too sent him into hysterics.   Wyatt doesn't cry as a rule, unless he is hurt, so this is a brand new thing for him. 

Another new thing is the sleeping habits of both twins.  Zoe's is hilarious:  hand her her tookie (soother), her bunny, her blanket... and she simply flumps over and that is it.  Goodnight.  Unless she loses her tookie and then it's a very sad baby until she finds it and then once more, flump!  Goodnight.  Wyatt has proven a bit more difficult lately as he will not settle for love nor money.  Even if he falls asleep during his bedtime snack, he will wake up and play until at least 10:30 pm. He's back up again at 7:30, so you can see how this cuts into any alone time that Sean and I have any delusions wishful thinking about. 

Mr. Quinn is turning into a young man in front of our eyes.  He is an excellent big brother, always there to save Zoe from her folly (like climbing on the coffee table) or to de-tangle Wyatt from some offending toy/article of clothing/room hazard.  We try to set aside special time for him every day, just to make sure that he does not feel left out.  He and his Dad have Lego Batman 2 to go through together at the moment, so I have to look for my opportunities with him.  Recently, he helped my plant my garden;  my brother had picked up some pepper and tomato plants for me and Quinn helped me organize everything and put the plants in the ground.  Hugging him is like hugging a coat rack these days as his baby fat is a dim memory and he seems to be all angles.  He too surprises me daily, with his intellect and quick wit.  He also expresses insight and empathy in levels that I wish many adults could develop.

We watch, we wait and we marvel at new developments. This is what we do.  It's not always rosy and happy;  we all have our times of trouble.  Work.  Money.  Stuff.  It's just life. We can't stop the march of time, I wish we could.  What we can do is bend it a little, to be able to relish particular points in time.  We don't really have golden years, we have golden moments that shine as brightly as the dawn.  It is these moments that illuminate the darkest of hours and fortify us for future trials.  A little more muscle tone, a little more communication, a little more self correction and independence.  Watching Wyatt stop himself from falling forward in the pool is the culmination of months of work and a perfect example of what I speak.  It is over within a second, you will miss it if you are not looking.  He used his trunk muscles, his legs, his arms, his balance and reacted in an instant to something that could have been dangerous.  To him, it meant multiple systems working in tandem.  To me, it was a ray of light.  That one gleaming moment and others like it, mean more to me than all the actual gold in the world.

I have a good life.  We have a good life.  Not all of it glistens, but enough of it lights the more shadowy paths.

(Whop, whop, whop...)

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Sunday, July 15, 2012

Silent Sunday: Everybody in the Pool!

The Big O Ball

Much better hair
Hey Fella.
Wy Playing with the Water
Big Splash!
Zoe has all the stuff

Sunday, July 8, 2012

Person First (or, "Arrow in the Knee")

I've found myself in a weird little place lately.  Too much work, too much dramatrauma, too much stress.  As my BFF put it so succinctly the other day, I've been putting too many pennies away.  Once upon a time when we were young and very impressionable students, she had a preceptor that explained it thus:  nurses are famous for suppressing things.  Something will happen, she said, and you will have to continue on to the next thing. So, you put it in your pocket for later, like you would a penny.  After a while, the pennies will start to add up and your pocket will fill, to the point of bulging if you are not careful.  If too many pennies are added, the pocket will rip and everything will spill out all over the floor.  My BFF has never forgotten her words and neither have I. 

I've been putting a lot of pennies away lately.  Sadly, I haven't been putting my change in the bowl at  night (like I was supposed to) and it was really starting to affect me.  My pockets were weighing me down and making so much noise when I walked I could barely hear myself think. Instead of doing the things that I usually do, such as this blog, I have been playing a lot of Skyrim.  I've been killing dragons, both literally and figuratively for a few weeks now; losing myself in a game has assisted me in finally emptying my pockets.

I was more than overdue to tap some vacation time and except for a little hiccup with some overtime this past Friday, I will have two weeks to do a little psychological housecleaning.  It is a needed thing,  especially in a family as complex as ours.  As hard as it is, I have had to put myself first for a bit.  Instead of being the mother/wife/nurse, I have to nurture the person part for a while.  It's a lot harder than it sounds, putting my person first, ahead of everyone else.

It was that phrase person first that got me thinking.  It could mean a lot of different things to Team Logan right now, aside from my head spelunking. Our wants and needs are as diverse as the personalities in our little band.  It is not that surprising then, how two little words can describe so much.

As I attempt to delve back into the dim recesses of my memory, I think it was my first semester of Nursing that I encountered the phrase person first in terms of language. Keep in mind, this is the early nineties we are talking about and 'political correctness' was a new, hot button topic.  The concept was pretty simple yet still completely foreign to most of us.  It was introduced to us with the idea that our patients were people, not the sum of their diagnosis.  For example, "Mr. Smith has diabetes", not "Mr. Smith is a diabetic".  "Suzy has schizophrenia" not "Suzy is a schizophrenic".  It sounded silly at first... I mean, what's the difference?

Almost too subtle to grasp at first, the difference, as explained to us by our ever patient professor,  was that the first example addresses clients as people who happen to have needs, while the second was dehumanizing and focused only on the disease or condition.  In essence, you were saying Mr. Smith was his diabetes, nothing more.  It was totally not what we were used to and seemed (at least initially) to be completely wasted on us.  After all, were were a lot of eager Nursing students who were almost obscenely fascinated by disease process and almost blind to the people experiencing it.  In an almost macabre way, it is hilarious;  we were afraid to go into the rooms and wake people up in the morning, but we would crowd around gawking at a gangrenous foot completely oblivious to the person attached to it.

Obviously, I've become a little more savvy over the last *cough* years.  Society as a whole has become a little more aware of the words that they choose, but this kind of thing still persists.  Once I found myself to be the Mom of a little person with Down syndrome, it wasn't much of a stretch to guess that person first language would continue.  Wyatt is not "my Down's kid" or "a Down", he has Down syndrome. 

In our 'real' lives, outside the context of this blog, we take person first out a whole new door. I do not refer to him as "my son with Down syndrome", rather he is simply "my son".  There are many other identifiers that are employed long before we touch on the extra chromosome, including "twin".  I'll even refer to his AVSD diagnosis before touching on his Trisomy 21.  Sometimes I forget and think of him as my youngest child, but then I have to remind myself that he is three minutes older than Zoe.  He is very much his own person complete with likes and dislikes, wants and needs... all of which he can communicate quite clearly.  He is Wyatt.  Believe it or not, I even forget he has DS sometimes.  He's one of my kids, doing his own thing at a slightly slower pace.  I've mentioned before my early concerns that having two different babies at two different levels of development would just highlight his Down syndrome.  Boy, was I wrong.  I just have three different kids, is all.  He does have some "special needs" that seem initially above and beyond those of the other two, but when you really look at it, I'm doing the same thing for all the kids.  How we approach things with Wyatt is the difference.

I was talking to a friend the other day whose 5 year old son has DS.  M was at the beach and a South Asian lady in a sari came up to her and said "My daughter looks like your son".  I had to crack up when my friend replied "Oh, is your daughter blonde too?".  At the woman's confused look, my friend continued on by saying her husband is Portuguese so most people are surprised at her children's light coloured hair and aren't genetics wonderful, etc, etc.  The lady, her mouth twitching into a smile, replied "No, I meant my daughter has Down syndrome".  M wasn't being sarcastic and aside from being tired from too many night shifts, is a pretty smart cookie.  It just didn't occur to her immediately that DS was the topic as her son is a little boy first.  His chromosome count wasn't even on her radar.  I laughed when she told me this and shook my head.  I'm learning that this is typical for a parent of a non-neurotypical child;  we don't think of our kids as different a lot of the time until it is pointed out to us.  They are people first.

It's funny how one phrase can mean so many different things, but it does.  It's the same with "Down syndrome" or "Autism" or anything else as well.  It comes down to a matter of perception, a matter of choice, even a matter of timing.  This week, for us, is person first.  We are not defined by our perceived shortcomings or level of ability.  We are not defined by our professions, our roles or the amount of pennies in our pockets.  We're not defined even by our Xbox skills... which is good as my husband teases me mercilessly about me "driving" my character like it was a remote control car.  Team Logan is a diverse little microcosm.  Just like your family.  Just like everyone else's family.  We'd probably be a lot better off if we remembered that more. 

Now, if you will excuse me, this particular person is going downstairs to forge some Dragonscale Armour.  It should serve me well, both in Skyrim and metaphorically in the days to come.  Sometimes we all need a little therapy;  sometimes our sword and magic helmet are not enough.  It's the people that we surround ourselves with that will make the difference between whether we come out of the basement again or not.  I am blessed with the persons that inhabit our little house.  Team Logan has many adventures ahead of us yet;  it would be a shame if one of us took an arrow to the knee now.

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