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 fiancée 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.

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.

In the News - November, 2011

I am always on the lookout for a good piece of news, especially when it comes to Down syndrome. 

As many of you know, Down Wit Dat has it's own page on Facebook.  On there I post things from all over the world that I think would be of interest in regards to Down syndrome.  Generally it is something that I think others might like to dialogue about...  In any event, I post a lot of links.

The other day, in typical Sean fashion, he casually mentions to me that "you post a lot of links" on the FB page and that I should be posting them here as well.  Ok, we'll give him credit for being right twice this year (the first was starting this blog in the first place).  After some careful thought, I've decided to do a monthly wrap up and feature all the stories that I have posted.  Welcome to "In the News", the first of these installments.

These are in order from newest to oldest (according to when I posted them).

Legend:
Ⓥ  indicates a video
Ⓐ  indicates an audio clip
Ⓟ  indicates photos
Ⓛ  indicates links or resource materials
Ⓑ  is for blog posts.


Down Syndrome Music Therapy  (Australia) Ⓐ

Alzheimer's:  Deep brain stimulation 'reverses' disease (UK)

Woman with Down Syndrome enjoys life through Art (Vietnam)

Downs:  The History of a Disability (Canada) Ⓐ

Smile that melts misconceptions:  How Taya, who was born with Down's, became darling of the modelling world (UK)

Man with Down's Syndrome ignored after he was detained in hospital and locked up before he died (UK)

Brain Scan identifies patterns of plaques and tangles in adults with Down Syndrome (USA)

Still Face Experiment (USA) Ⓥ

Local Girl wins national award for Most Beautiful Eyes contest (USA) Ⓥ

Dr. Allen Crocker, 85;  offered care and hope to children with Down Syndrome (USA)

A case that shames the Isle of Man (UK)

Study Finds Genes for Down Syndrome Heart Problems (USA) Ⓥ

The Simple Truths of Service:  Johnny the Bagger (USA) Ⓥ

The Specials (UK)

Indian artist with Down’s Syndrome raises funds for Vietnamese brethren (Vietnam)

Teacher and student become mother and daughter on National Adoption Day (USA)

Duo in Chicago:  Down Syndrome doesn't stop this athlete and her sister (USA) Ⓥ

The Queen's Hidden Cousins (UK) Ⓥ

Lauren Potter - The ABLE ACT (USA) Ⓥ

Glee's Lauren Potter Appointed to Obama's Disability Committee (USA)

What If... (Canada) Ⓑ

Advances in Down Syndrome Cognitive Research (USA)

Learning Disabled Actors to Star in TV's Shameless (UK)

Peipmeier, Cantrell:  Looking Anew at Down Syndrome (USA)

Final Touchdown, ultimate show of sportsmanship (USA) Ⓥ

Royal Winter Fair - Co-Op Program (Canada) Ⓟ

Down Syndrome Ability Awareness (USA) Ⓥ

Danangi's success story shows the way to other Down Syndrome children (Sri Lanka)

Boyfriends, Uggs and Vodka:  One mother's strikingly candid account of seeing a Down Syndrome child grow up (UK)

Jamie Foxx's Sister:  New Down Syndrome Ambassador (USA)

Special Needs Apps (USA) Ⓛ

My Brother has Down's Syndrome and I Love Him (USA) Ⓑ

...Shall We Dance? (India)

Parents of Children with Down Syndrome Speak Out (Ireland)

Down's Syndrome Boy's Mum asks:  When did it become comedy to laugh at kids like my son? (UK)


Park Ridge Hospital breaks ground on Down syndrome facility (USA)

Buddy Walk raises awareness of Down Syndrome (Canada) Ⓥ

Alex and Jollean (Canada)

Carly's Voice:  Changing the world of Autism (Canada) Ⓑ

Man with Down's syndrome becomes first to pass driving test (Ireland)

2012 Calendar (Scotland)

Down Syndrome Program (USA) Ⓛ

Sudbury Catholic Student Helping Others to "See The Ability" (Canada)

Parents hope treatment will 'given them back their little boy' (Ireland)

U. receives major grant to explore causes of Down Syndrome (USA)

Defeat Dementia in Down's Syndrome Study (UK)

Jamie Foxx on Caring for Sister with Down Syndrome:  'I don't call it a condition, I call it living' (USA)

Shifting Perspectives at the Dublin Arts Council (Ireland) Ⓥ

Down Syndrome Awareness Week (Canada)  Ⓥ



Down Wit Dat was featured this month:

 The Colour of Flowers:

"The Colour of Flowers "

... and on Moms Who Drink and Swear:

"Nik's Monthly Picks"


Whew.  That was a lot of links.  I hope December is just as productive.  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.

Baby Talk

You know you are getting older when time changes consistency.  When I was younger, time seemed to crawl. Summers were endless.  One night could seem like forever.  Time used to be denser, more viscous, stretching to an almost impossible degree like molasses from a spoon.  Now that I am older it seems to run through my fingers like water.

Lack of time, whether perceived or actual, is a common theme around here.  With three kids, two of which are under a year old, you can imagine how short the days really are.  In the course of those short days, the twins seem to be aging in front of my eyes.  What, over 9 months ago were tiny birds of human beings, so fragile and helpless, are now communicative, interactive and locomoting babies.  Each day brings new discoveries, new skills.  New conversations.

There was a point a few months ago where Zoe started to say "mumumumum" as she sucked in her bottom lip and looked all the world like a little old lady.  I took this as a victory of sorts as our eldest never said "mum" or "mama" until he was something like 18 months old.  His first purposeful words were early by some standards, around 7 or 8 months.  They were, in order of appearance,  "dada", "kitty" and "guitar".  Eventually he came up with a word for his dear old mum;  he called me "lady" for months.  You can imagine how happy I was to hear Zoe's "mumumum".  No matter how random, how unintentional, her first entry into the world of speech featured yours truly.  She said her first real word the other day.  It too was "dada", followed by "baba" which seems to mean her soother or a bottle.  When I came home and heard that she had said "dada", I wasn't about to take the wind out of hubby's sails.  "Mumumum" will always be enough for me.

Wyatt too is engaging in what they refer to as "canonical babbling" where there is a repetitive string of alternating consonants and vowels.  He tends to favor the letters r, l and a and has been doing it longer than his sister.  Like most people, I took that to mean that his speech was coming along right on schedule.  I have since learned that all babies, even those that are deaf and cannot hear themselves or those that are delayed for one reason or another engage in some form of canonical babbling.  This is not indication of future speech abilities.  I'm not going to let that bit ruin our enjoyment of it either as I am encouraging and repeating it back to him just as I have done with his siblings.  With him, it's different only in the sense that we throw in a sign once in a while (when we remember).  We do this for two reasons:  one, children with DS are visual learners and this makes it easier for him to associate.  The second reason is that children with DS are typically delayed in expression, not interpretation.  As any parent of a frustrated toddler can imagine, this can be a very difficult stage, one that can last much longer than with a typical child.  Since the neural pathways are the same for articulating a word or using a sign, teaching him sign language will assist in his self expression while helping him further develop the parts of his brain that control speech. 

The next stage, "variegated" or "mixed babbling" is something that I hear sporadically from him.  Instead of a repeated set of consonants and vowels, they mix it up and put two different sounds together.  As an example, instead of "gaga" we would have "wee-ga" or something similar.  Zoe is already all over this;  one day I took out her soother and she looked at me and said "Hi Bob".  As far as I know, girls develop in this area faster than boys do.  However, not to be outdone, Wyatt gets extra points as he manages to string together a whole variety of sounds, peppered liberally by "thhhhhpptttthhhh" noises.

The best part of all of this is that they take turns.  Instead of a house full of screaming/babbling/attention seeking infants, I have two that alternate.  This is awesome when they are upset (I've only had them both crying a handful of times) and even better when they "talk" to each other.  When they are close together, they touch or make a few sounds, but when across the room from each other (say, in their cribs or in the stroller) one will "ah-bah-blah-gaga" and then wait for the other to answer.  It is hilarious and priceless all at the same time.  It is wonderful to sit and listen one of them babble on the monitor, it is absolute magic to listen to both of them have some sort of "dialogue".   

They are also two of the most emotive babies I have ever seen.  This is a fabulous age as it is no longer a matter of "what that particular cry means" but rather what their face and body language are telling us.  Zoe is easy as she just starts doing what she wants.  She can get out of any three point harness, any time, anywhere.  Some babies fuss and lean and try and climb out after giving signals, she has one "tell" and then she is OUT.  Wyatt is a little more subtle.  He's a clever mimic (as is common in children with Down syndrome) and reaches out and touches things a lot.  You have to learn to read him in spots, but once you do, you realize how much he really is communicating with us. His smile is still infectious and can make even the worst days seem effortless.

We have definitely crossed over the threshold where we are no longer "talking at" the babies, but rather "talking to" and "talking with".  They both listen intently as they analyze your face and try to figure out what you are on about.  You can see it in their expression, you can see it in their attempts to answer back.  From Zoe's intense furrowed brow to Wyatt's "yuck" face (where he makes it very clear that he dislikes what food we've put in his mouth as he pushes it out with his tongue.  All that is missing is "why Momma?  Why?").  Whether verbal or non, they both have a lot to say.  It's a welcome change and a special place to be as we have so much to share with one another in the time that we have together.  Next it will be words, then sentences, then off to school...  This time too will slip through my fingers before I know it.  Down syndrome has taught us to cherish every step, every milestone, every moment.  Which we will do, even with something like this.  I've made a point of telling my kids how much I love them every single day.  They always tell me the same in return, even if it comes out "ah-bwah-gah".