Saturday, December 31, 2011

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 magical 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 educating one's self an 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 less agile 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 are my mind and 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 a 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 darker days, people need informed 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. That grieving was not "expected".  That the real stressors were given the credit they were due and not projected over to the condition.  I can.  I have.  I will.  I did.

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 Motivate 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 understanding, may it bring you joy.  May you too find your ember and may it warm your soul.

Friday, December 30, 2011

In the News - December 2011

Here are the links featured on Down Wit Dat's Facebook page for the month of December.  This time around, they are in order from oldest to newest.

  indicates a video
  indicates an audio clip
  indicates photos
  indicates links or resource materials
  is for blog posts.

"One of them is my sib video contest" 

PTSD Concern for Parents of Premature Babies

Down Syndrome 

Helping Babies with Down Syndrome Develop Speech & Language  

My Kind of a Future

On the Use and Power of the Word Retard 

Down Syndrome Testing

A Chosen Child

Down Syndrome Actor Steps Up to the Mark in Groundbreaking New Play

An Apology from Your Child's Former Teacher

The Canadian Down Syndrome Society Annual Conference

Monica and David

December 10th is Human Rights Day

A Perfect Fit for Those with Down Syndrome

Signs of Sensory Processing Disorder

Jazzy Holman Doesn't Let Disability Stop Her

Hidden Angels:  American Families Saving Children with Down Syndrome

The 5 Stereotypes of Down Syndrome

Biologists Use Flies and Mice to get to the Heart of Down Syndrome 

New Findings Validate the Accuracy of Autism Diagnosis in Children with Down Syndrome 

Lung Function of Moderately Premature Babies is Reduced at 8-9 years but may Improve with Age.

Firefighters deliver labour of Love

Also published in December:

Speech Therapy for Infants with Down Syndrome

Atlantioaxial Instability in Down Syndrome

 If you find a cool link, don't hesitate to send it my way via email or our Facebook Page (don't forget to "like" it while you are there).  You can also follow us on Twitter @Down_Wit_Dat.

...and that's the news.

Wednesday, December 21, 2011

The Best of Times, The Worst of Times...

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us, we were all going direct to heaven, we were all going direct the other way..." --Charles Dickens, A Tale of Two Cities 
This year has been all over the place for my family and I. It's been a roller coaster at times and mind-numbingly tedious at others.  Our life this year has had more twists and turns than your average goat path through the mountains.  It's beginnings were inauspicious enough;  2011 started, as many years do, quietly in my basement.  My OB had taken me off duty a few days earlier; instead of me greeting the New Year alone at work, we did so together, in front of a crackling fire.  My brother and his fiancĂ©e were visiting and the evening was filled with snacks and Rock Band and footage from Times Square.  It was probably one of the last "normal" evenings for us as I stuffed my face with mini beef wellingtons and patted my enormous belly.  A normal New Year's Eve, with kisses at midnight, phone calls to far away parents and the frost twinkling as our company crunched down the drive towards their waiting cab.  Normal.  Typical.  We put the leftovers away and went to bed shortly after 2.  After all, our son would be up and raring to go sometime after eight.

A few days later, nothing was normal.  My aunt had passed, a friend was critically hurt and my unborn son had a hole in his heart and likely had Down syndrome.  A week after that and I was lying awake on the futon in the future nursery writing (what would eventually be my first Down Wit Dat entry) in my head.  At first, it was a crie de coeur, an open letter to my family and friends, explaining what had happened and what had changed. It also put the unintelligible screaming in my head into words, ones that I did not yet dare speak aloud.  It worked... That "note" and the ones that followed helped keep my loved ones informed and kept me focused.  The writing was raw,  as rough and bleeding as the emotional wounds it described.

People began to contact me and ask for new updates.  As new information came forth about my son, it was easy to do so.  Once the babies were actually here, once they were home, it seemed to be a never ending parade of doctors appointments and things to do.  By the time that they had been home two months, Wyatt had gone to four doctors (two of them more than once) and Zoe had already had surgery on an inguinal hernia.  Each new thing was mind-wrackingly, gut-wrenchingly stressful, but we soldiered on.  I started putting my entries together into what would eventually become this blog.  The kids grew, they developed... eventually I tagged in my husband and I went back to work as he took over the house.  Here we are in December again... and where we are now seems so remote from last New Years Eve that it seems to have happened to some other family.

When you consider it as a whole, it does seem like a bunch of "bad luck", a string of negativity that would threaten to garrote the best of them.  One could look at our year that way.  It has been pretty painful in spots.

I however, refuse to.

To write off 2011 as "a difficult year" would be to negate all the positive outcomes as well.  After all, this was the year that we welcomed not just one, but two new members to our family band.  Two beautiful, personable, remarkably healthy babies who are completely nibble-able.   From their respective medical encounters has come a wealth of knowledge that we have gladly passed on to those that wanted it.  Through Wyatt and his "atypical"-ness, we have discovered much joy and learned to live, not task our way through every day.  We've gotten closer as a family and set free a lot of the emotional flotsam that has slowed us down.  We've learned the value of hope, the necessity of celebration.  We've learned how much we love, and how much we are loved.
That does not mean that we gloss over the tricky bits either.  Instead, we have embraced our "difficulties" and used it to fuel our endeavours. This blog for instance, and any and all education and outreach projects that have and will spring from it... would not exist if I did not experience this year in it's entirety.  My determination to make this process easier for the 'new parents' that come after me is a direct result of that.  Each new insight into how much work there is left to do helps me get out of bed in the morning.  Any anger, any pain that I may have regarding Wyatt, his health or how the world sees people like him is being re-channeled and reborn into dedication, purpose, even passion.

Early on I was confronted with a question:  if I could change Wyatt so that he no longer had Down syndrome, would I?  Then, when everything was fresh and new, I answered with an emphatic yes!  Now, the answer is much different.  I didn't want a "Down Syndrome baby".  Wyatt was Down syndrome in my mind, and it, he.  To me it was the end of the world.  Now, it is no longer the end of everything, but a beginning of a new thing.  My thinking has evolved.  If I could somehow change his genetic make up, I don't know that I still would.

But, even as I'm writing this, I ask myself why would I even bother at this point?  Yes, he could probably go on to med school.  Or not.  Maybe he'd be a star athlete... or not. The list of things that he could go on to be if he didn't have DS is a long one, for sure.  I know this as I listed them off to myself, one by one, once I found out that he had it.  He may not be a dashing surgeon or a brilliant psychiatrist, but he will also not know what it is like to work for an unforgiving public who only cares about what they think you should be doing for them, right now.  He may not be the star quarterback of his high school football team either, but he also won't know what it is like to blow a knee and be a washed up piece of meat at 18.  He will probably be subjected to ridicule and sadness at some point at the hands of some cruel, hate filled individual or even an ignorant one that "doesn't mean it that way".  Those may even happen at the hands of a person of authority.  As time has gone on in this year, my answer has changed a great deal;  instead of fearing the condition that makes the world a big bad place for him to be in, I want him to keep the unique perspective that DS will allow him to have that his brother and sister will not. 

We have no illusions of the future.  Maybe we are in a "bubble" of happiness right now, as my critics would contend, or not. Both my husband and I know that as time goes on, as his siblings develop into the adults they will become, Wyatt may be left behind at some point. We don't know when, or how or even "if".  As his features become more pronounced as he gets older, there will be probably be more isolation, less acceptance at the hands of his typical peers.  Or not. Perhaps our fears are as unfounded as our initial ones.  One can only hope.  If I have any impact at all, I will lessen that separation, even if only a little.

This year has been both the best of times and the worst of times.  So much good has come out of this year.  So much love, so much sharing, so much learning and so much acceptance. Some may say it's a matter of spin.  I would answer that it is a matter of new awareness and growing acceptance. This year may have been riddled with seemingly profound pain, but more importantly we have experienced profound growth.

Yes, our family was forced to fish much deeper water than most, but ah, the sights we have seen...  All from a little chromosome.  All from a little boy.  A little boy that has garnered the amount of enthusiasm generally saved for a Stanley Cup Win, simply for learning to hold his head steady.  For laughing.  For pulling himself into a sit.  Once.  Each new feat is as sweet as the monk's strawberry. You appreciate the effort, you delight in the simplicity, you savour the flavour.
These are indeed the best of times.  Yes.

Thursday, December 8, 2011

Looks Like Down Syndrome

Even though I know that I am a biased mother, I still think my son is cute.  I think all my kids are cute, but Wyatt, the one that came with a little extra, is pretty damn cute. Sleeping, awake, serenading me with "Oooo", it doesn't matter.  Cute.

Lots of other people find him (and all my kids) cute.  I am constantly getting compliments.  Especially when they see Wyatt's big blue eyes and the Brushfield spots that form white lace around his pupils.  If they ask about his eyes, I will tell them, just as if they ask about something else that is unique to him.  Usually though, I just say thank you and smile.

Once I tell people that Wyatt has DS, there is usually a pause.  As I've said before, people just don't know what to say.  One of the most common things I hear is "well, he certainly doesn't look [like he has Down Syndrome].  This is the point where I often find myself at a loss as to what to say.  Do I say "well, he does sometimes" or "I know" or what?  Lately I've been scrolling through pictures when this occurs and I just keep going.  Yes it is more evident here, but not here.  But why is that?  How does that work?

Photography is a tricky thing.  Even with the most basic of cameras, a halfway decent photographer can change the look of a person just with a few simple changes.  Lighting.  Positioning.  Cropping.  Focus.  Throw in a little time on hair and makeup and there is a world of difference.  Throw in a little more time and have the model actually pose, and you are really getting somewhere.  All those pictures taken on the runway or the red carpet where the model has one leg in front of the other...  Do real people stand like that, or walk?  No.  It tricks the eye, making legs look longer and hips smaller and takes the eye away from a potentially wrinkly or pointy knee.  Want to know why you always look crappy in family holiday photos?  You probably were acting naturally.

I've discussed the most common physical manifestations of Down Syndrome before.  Wyatt has very few things on that list.  His head is shaped different, his face is flatter and his nose barely has a bridge.  He has epicanthal folds and as I mentioned earlier, Brushfield spots on his irises.  His hands and feet are "normal" in the sense that he does not have a simian crease or a sandal gap.  He doesn't seem to have shorter legs or arms, but he is still a baby and we will not know for a while.  His fingers look like any other baby's:  chubby, short and straight.  His nails grow twice as fast as his twin sister's.  Wyatt has hypotonia and his muscles are much weaker, which at this point is reflected in the twins weight:  although they are the same size, his muscular sister weighs over a pound more than he does.  He still has a hole in his heart.

What has erroneously been attributed to the "look" of Down Syndrome has often been described as "adenoidal", "slack" and even "slumped".  Rounded shoulders, open mouth, visible tongue, unfocused eyes.  Add epicanthal folds, smallish low placed ears and a weak bridge of the nose.  I remember being told as a child that this was due to them being "retarded";  over 35 years later I know this to be untrue.  It is a matter of posture, a matter of poorly developed muscles.  It is a matter of poor perception on our part.  What has been used as a broad description for so many, what has been touted as matter-of-fact is really a matter of needing a little physiotherapy.  It is not a determination of mental capacity or function.  Neither is an unfocused stare, which any child can exhibit from time to time, dependent on his or her level of engagement or interest in something.  I can well attest to this as I watch Wyatt's eyes bore into me like little blue lasers as I sing or talk to him. Hypotonia is not an indication of mental functioning.  Not.  Discriminating against someone for their lack of muscle tone or control makes as much sense as discriminating against a fish for their lack of feet.

Secondary to this is a disturbing trend that I have come across in my travels lately.  Yes, "the R word" is still popular in many circles.  I know those around me are changing their thinking;  whether it is out of respect for me, or for Wyatt or for their own shifting ideals, I cannot say.  What I can say is that what needed to be pointed out once, was then apologized for and is now self-corrected mid word (or gone completely).  I appreciate that.  This is not what is troubling me.  What is bothering me is the substitution of "Down Syndrome" to mean the same thing, to be used in the same place.  All you have to do is use "down syndrome" as a keyword search on Twitter to see what I am talking about.  Yes, my community peeps are there, taking the word back.  Keep scrolling and you will see a lot of what I am talking about.   Everything from "Got my new driver's license today. My picture is fantastic! I look like I have Down Syndrome" to "All kids with down syndrome look the same0.o, no matter what race they are." to "I'm dealin wit fuckin fucktards wit down syndrome!! I cnt do dis!! I'm annoyed 2 da MAX!!" ... and worse.  So much worse.

I can't change how people talk.  I can't change how ignorant some folk are. Some people, for one reason or another will always require a scapegoat or someone else to put down to make their narrow views look larger and to make themselves feel more special.  What I can point out, none too gently, is that once upon a time, that word or phrase could have been "gay".  It could have been many things, up to and including a word beginning with "N".  People forget that all too easily.  Play with those tweets, substitute your own slur of choice.  It isn't all that funny now, is it?

Using the R word or describing something as "Down Syndrome" other than the condition itself, no matter how benign in intent, hurts those who do not deserve it.  It is not funny.  It does not make you look clever.  Although you may not have "meant anything by it", others most certainly do.   When you use these words you are exposed for the ignorant, small minded soul that you really are.  Expand your mind and your vocabulary.  Do not create a safe haven for bigotry.

Wyatt will have many challenges in his life.  To be good parents, we will have to let him get dirty and fall down and scrape his knees.  I suffer no delusions regarding this.  As with any other child under the age of one, we will not know how well he will perform in school or his level of functioning overall.  What we do know is that we have a loving son, who lights up like a Christmas tree every time he sees one of us.  A son whose every accomplishment is later and more awkward than his twin sister's, yet is greeted with as much enthusiasm (and perhaps a little more in some cases).  He has Trisomy 21 or Down syndrome.  He has some features that are often expressed by an extra 21st chromosome.  It doesn't make him any less human, or any less deserving of love, of education or of respect.  He looks my husband and I... and at times, a lot like my Grandma Brown, oddly enough. He looks like Wyatt.  He looks like himself.  He looks like a little boy, full of mischief who only wishes to love and be loved.

Just like the rest of us.

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