Saturday, March 31, 2012

In the News - March 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 March.


AUDIO indicates an audio clip
BLOG indicates a blog post
LINKS indicates links or resource materials
PHOTOS indicates photos
STUDY indicates a study
VIDEO indicates a video

BLOGSeeing the Best in Every Child:  The Importance of Neurodiversity

Special Athletes, Fans:  These Olympians get cheers from each part of S.C.

Ending the R-Word: Ban it or understand it?
VIDEO Would You Call My Child a Retard?
BLOG Today is the Day to end the Use of the R-Word

R Word: Spread the Word to End the Word
BLOG Someone is listening--Lets Eliminate the R word

Autism:  Don't Look Now, I'm Trying to Think
BLOG Redefining Normal Every Day
BLOG What is 'Normal' Anyway?
VIDEO Sujeet Desai:  Amazing grace:  Message of Hope

Animal School

World Down Syndrome Day is Approaching!
LINKS Down Syndrome - Information on Causes, Care and Resources for Down Syndrome Families

Two Friends with Down Syndrome to Make history by completing the LA marathon

Oldest man with Down syndrome dies in Waseca

Meet Bingham High Schools incredible Prom King
VIDEO World Down Syndrome Day 2012: LET US IN - I WANT TO LEARN
PHOTOS Photos of World Down Syndrome Day (from WDSD Group)

World Down Syndrome Day - March 21

Putting the Spotlight on Down Syndrome

Mum's Map aids Down's parents

Researcher, 17, Conducts Down Syndrome Study
LINKS World Down Syndrome Day

2012 Canadian Down Syndrome Day Heroes
VIDEO 21 Faces of Down Syndrome
BLOG Happy World Down Syndrome Day!
BLOG The Unsung Heroes

World Down Syndrome Day 2012
VIDEO Young Love ::: Down Syndrome Awareness

Curcumin nudges sluggish protein folding

Langdon Down Museum of Learning Disability, in Teddington, to explore history of Down's Syndrome

iPad:  More than a Toy;  A Voice for the Disabled

High School Basketball Player with Down Syndrome Barred from Team as he's too old
VIDEO Glee Star Lauren Potter in New Series!

Perfect Love - Anna-Kay Tomlinson counts her blessings

Banar is Down Syndrome Hero

Governor's Mansion Displays Blue Ribbons for Down Syndrome Awareness

Monica and David Screening and Discussion

Artist born with Down Syndrome exhibits her work at Osceola32

Local Mom writes children's book on raising a child with Down Syndrome
VIDEO Ace Eicher, Girl, Explains Why Brother with Down Syndrome is Just Like Any other Kid

Down Wit Dat was named as's Reader's Choice Best Special Needs Parenting Blog this month:

Favorite Special-Needs Parenting Blog

Readers Respond:  Tell Us What you Love About 'Down Wit Dat'

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

Friday, March 30, 2012

Down Wit Dat: Winner of's Reader's Choice Best Special Needs Parenting Blog

You have to admit, some mornings are better than others.

After another late night with the babies, I awoke this morning to find my phone blinking insistently at me.  "Now what?"  I thought, as I clicked it on, expecting the worst.  What I got instead, was this:

[Enter nonsensical w00ts and squeeing here]

You can imagine how my outlook changed dramatically after that.  :)

I would like to thank each and every one of you that voted for Down Wit Dat.  Tirelessly, without fail, you took the effort every day to vote for our little blog.  Whether you are family, a friend, an online friend, a colleague or a fan, I want you to know how much I appreciate your efforts.  Thank you.

This experience has been like no other.  I've found support in the oddest of places.  I've had backwards walking-down-the-hallway convos at work ("By the way!  I love your blog!  I vote for you every day!") from people that I only smiled at before.  I've been contacted by parents of kids with special needs (other than Down Syndrome).  I've heard from people who don't have children or even know what a blog is.  Advocacy, much like politics, makes some strange bedfellows.

Through this blog, I have met and talked to many people in the special needs community.   We have shared our stories and learned from one another.  We have laughed and cried together.  It has been overwhelming at times,  it has threatened to make my heart burst at others.   I have witnessed the true strength of the human spirit and it has given me hope.  What started out as a little signal fire that I could warm myself by has grown.  Now, I share it with many. 

Once again, I thank you.  I plan to continue to spread awareness and foster inclusion.  I hope you will continue to be there with me. 

Monday, March 26, 2012

All Systems Go, Retro!

There is an ephemeral quality to life these days.  We seem to be showered in milestones.  It appears that every time I turn around, one of the kids is doing something dazzling that makes me stop in amazement.  Our latest accomplishments vary in degrees of success and bravado, but I can assure you that every single one of them has been noted and celebrated.  Like the stars in the sky, they each shine in their own way.

Take Zoe.  In the last two weeks, she has learned to clap and point.  It is adorable.  She has also taken up to five steps unassisted, which is fabulous.  On the "scary" side of things is her strength;  one of her latest tricks is pushing the playpen around.  I'm not talking a little nudge here or there either, as she can go up to the side and propel it across the room effortlessly, much like she would a shopping cart.  Two things happened the first time I witnessed this.  Initially, I stood open mouthed and completely agog.  A few nanoseconds later, that was replaced with "How in the hell am I going to contain her?"

Comparatively, she is mini-hulk.  At a recent weigh in (using our bathroom scale), Zoe is currently 19 lbs which puts her just under the 25th percentile (no change).  Wyatt, weighs 16.3 lbs which puts him up over the 10th percentile (an increase of about 5% -- w00t!).  She is solid. Fricken. Muscle.  Wyatt is also increasing his muscle mass, but at his own speed.

We are really starting to see the results of his hard work.  It gets a little disheartening at times as his learning curve is so much different than hers.  Yes, his "pushing up" is happening almost all the time now and for longer periods; yes, he is rolling all around the room.  Yes, he is sitting for longer periods and when he eventually bowls over, he is starting to naturally correct and roll onto his tummy.  He has also showed us a new trick;  pulling himself forward.  It isn't very graceful and it is only an inch or two maximum, but he can half push, half drag himself forward.

I have been encouraging him to do this for weeks, trying this toy and that one in the hopes of piquing his interest.  We have things that flash, things that reflect, things that rattle, chime and honk.  We have soft things and hard things and things that are fun to chew.  Nada.

You can imagine my delight when I looked over last week and saw him actually doing it!  That moment of squee rapidly dissipated as I realized what he was reaching for.  Hundreds of dollars worth of toys?  Not interesting enough.  A small piece of plastic wrap from a drinking box straw that he could possibly choke to death on?  It's milestone time, baby!

During last week's OT appointment, they asked if we had a kiddie car or the like to try Wyatt on.  I looked up from my laundry in semi-disbelief and pushed over our Radio Flyer Retro Rocket. I love this thing.  We bought it for Quinn for his first birthday and it has sat, unloved, in the garage for a few years.  It has lights that light up and buttons to push.  It has a Space Race/Golden Age male announcer voice that says things like "All Systems Go, Retro!  We're looking good!" and a rather patient female computer voice that informs the child that they are "Now approaching Warp Speed" or "Asteroid ahead".  The best is the countdown;  in the same Phil Hartman meets Buzz Lightyear voice, you hear "3...2...1... BLAST OFF!", at which time all the lights flash and the whole rocket vibrates.  The first time I sat Zoe on it, she looked around, saw the bright buttons and started hitting them at random.  When she hit the countdown and the vibrations started, she promptly freaked out (and has every single time since then).  I was very proud of my little boy as Wyatt sat on the rocket ship (with minimal support at his hips), with his back straight and his hands firmly on the hand grips.  He briefly looked at me in alarm the first time he blasted off, but then looked back down at the twinkling buttons to see what else the thing could do.  He was not disappointed.  Wyatt even got a ride on the rocking horse, which he enjoyed, grinning broadly all the while. 

With the (surprising) burst of warm weather, the kids have spent some time at the park.  I have been unable to go thus far, thanks to my work schedule and my silly insistence on sleeping a few hours a day.  Sean took them to one of the numerous playgrounds near our house, which unfortunately, only has one baby swing.  Zoe had the first turn and was apparently a bit apprehensive until Quinn started pushing her (then it suddenly became fun).  Wyatt, on the other hand, gripped the front of the seat in his chubby fists and giggled maniacally the whole time, hair blowing in the breeze as he zoomed higher and higher (which was probably a full 30° in total, but I'm sure it seemed much more to him).  They also took turns as Daddy held their hands and let them go down the baby slide. I so wish I had been there to see it.  Next time I am going and you can bet that I am taking the camera.

We've had a little progress with Wyatt's eating as well.  Previously I've mentioned that he would pick up a handful of food and then mush it around or just sit with it in his hand.  It's almost as if he forgot that it was there or couldn't deduce that he had to open his hand in order to put it in his mouth.  Since he has had some success with larger objects recently (such as cookies and birthday cupcakes) it got us thinking a bit.  As it was warm, a few days ago I was cutting up some little pieces of watermelon for Zoe.  Instead of chunks, I cut the melon into sticks for Wyatt (like you would carrot sticks).  He easily grasped them and was able to bring them to his mouth and bite off a chunk to chew.  The adaptation only fell apart when he started to shove too much into his mouth and gagged a bit.  However, both he and his sister were able to enjoy a tasty treat on a hot day.  They just did it a little differently.  We've now expanded the self feeding repertoire to include waffles, cookies and pancakes.  I'm hoping that the watermelon model works with sticks of cheese. 

Not so long ago, I asked a group of parents (who have multiples where at least one has DS) if they had a hard time once the "typical" children had very obviously surpassed the "atypical" ones.  How did they handle it?  How did they get through it?  Was it as upsetting as I was anticipating it to be?  The results were vague and lukewarm and I was a little disappointed with the lack of response.  What I realize now is that there wasn't much to report.  It isn't a big deal at all.  Having twins at two different levels of development is just like... having two kids.  Zoe may be babbling and mumbling to herself while toddling/crawling/scooting around the living room while Wyatt giggles while he rolls and inchworms about.  They are just two different little people that do different things.. and locomotion is no exception.

This age is astounding... and it shoots past all too fast.  It is all too easy to let the days blur together and stream by at warp speed until one day you realize they are about to start school.  I choose not to do that.  No matter how hectic or complex our days become, I am steadfast in my resolve to celebrate each and every little triumph.  When your child has Down syndrome, you no longer have the luxury of "expectations".  What we do have are adventures.  Instead of "potential reached" we have "mission accomplished!".  It may not be to infinity and beyond, but we are happy with our own little rocket ride.

All systems go, Retro.  We're lookin' good.

Wednesday, March 21, 2012

Happy World Down Syndrome Day! (and, Welcome to the T-21 Blog Hop! )

Today is World Down Syndrome Day.

Although it has been celebrated for 7 years, this is the first year that it will be recognized by the United Nations.  This date (3-21) was chosen to reflect Trisomy 21, the third or extra copy of the 21st chromosome that causes Down Syndrome.

For our inaugural post of the T-21 Blog Hop, and in honour of World Down Syndrome Day, I chose E for educate (to learn more about the Blog Hop, click here).  For those that don't know or possibly need a refresher, here is a quick synopsis of Down Syndrome or Trisomy 21. 

What is Down Syndrome?

Trisomy 21 or Down Syndrome is a genetic disorder caused by an accident in cell division.  This causes the creation of an extra copy of the 21st chromosome.  There are three different types of Down Syndrome:

Trisomy 21, where there is simply and extra copy of the 21st Chromosome.

Mosaic Down Syndrome where the creation of the extra chromosome happens later, causing some cells in the body to have it and others not.

Translocation, where a piece of the 21st chromosome breaks off and attaches itself to another (usually the 14th) which causes the same symptoms.

The extra genetic material can express itself in a variety of ways, including the stereotypical facial features and heart issues that many individuals experience.

Fast Facts about Down Syndrome:

  • Occurs in Approximately 1:700 births and is the most common chromosomal disorder.
  • Is independent of race, religion, creed, colour, socioeconomic status or nationality
  • Occurs independently of any maternal or paternal activity prior to conception and pregnancy
  • Maternal age can be a factor, although 80% of children with Trisomy 21 are born to woman under 35.  

  • 99% said they loved their son or daughter
  • 97% of parents said they were proud of their son or daughter, 94% of siblings reported being proud of their brother or sister with DS
  • 79% said their lives were made more positive by their son or daughter with DS
  • 88% of siblings felt that they were better people because of their younger sibling with DS

    People with Down Syndrome:

    • Attend school, even post secondary
    • Participate in the major decisions that affect their lives
    • Contribute to society in meaningful and productive ways
    • Flourish with a stimulating home environment, enriched educational programs, positive family support and good health care.

    People with Down Syndrome exist in every culture, every country, every corner of the Earth.  Today we come together to celebrate and spread awareness.  Today we show the world lives of value and of worth. 

    Welcome to my blog hop,  welcome to my global table.  Share your stories of support, motivation, inspiration, love and eduction.  If you do not have a blog of your own, submit your story in the comments below and/or Down Wit Dat's Facebook Page.  We meet under a banner of inclusion to foster acceptance.

    For today at least, the old adage does hold:  SMILE... and the world smiles with you.

    Spread the SMILE!  To add our graphic to your page, copy and paste the following:

    <a href="" target="_blank"><img src="" border="0" alt="Join Down Wit Dat on the 21st of Every Month!"></a>

    To Enter a URL, click the "Click Here To Enter" Link below the thumbnails.


    Don't forget to vote for Down Wit Dat as's Reader's Choice for Special Needs Parenting Blog. You can vote until the end of today using an email address or signing in through Facebook. VOTE HERE. Thanks to all who have participated and good luck to the other finalists! --Jxox

    Saturday, March 17, 2012

    The Working Mom Blues

    Being a working Mom ensures many things.  For example, it forces me to leave the house.  It also guarantees that I remember to shower, brush my teeth, change my clothes and run a comb through my rebellious hair.  I get to talk to more adults, which is also a bonus, although most of them have some kind of mental illness (or are really not very grown up at all).  Still, it keeps my brain from turning to complete mush from the constant noise or too many episodes of The Price Is Right.

    It also makes sure that I miss out on a lot of things too.  There is an old Nursing chestnut that says something along the lines that you get to spend all the holidays with your friends... at work.  Shift work makes it difficult to schedule things like appointments, which, in a house that has Specialists up the wazoo, means that I don't always get to go.  We also have three kids with commitments at various points in the day so the scheduling tends to get a little interesting.

    Last week Sean took Wyatt to his first speech assessment.  According to both my husband and the reports that came home, Wyatt is doing very well in this area.  To be honest, I wasn't sure what to expect.  Other than making different sounds, what could they evaluate?

    Officially, the exam is called an "Early Response to Learning Intervention (ERLI)" and is given through ErinOaks.  In the course of the hour or so that they spent there, Wyatt was evaluated in a variety of areas.  Each area was graded as "No concerns were observed or reported in these areas", "Difficulties were identified in these areas" and "Continue to check progress in these areas".  Thankfully, notes were given as well, so that we could understand exactly how he was meeting or not meeting each of the assessment criteria.  Wyatt was assessed in the following: (note, this is taken directly from ErinOaks Kids ERLI form)

    • Social Communication [The child's ability to communicate and connect with others, including greeting, making eye contact to communicate, sharing interest and enjoyment]
    • Play Skills [Play skills an communication development are closely related]
    • Understanding Language [The child's ability to understand language, including following directions, responding to questions, understanding words and concepts]
    • Expressive Language [The child's ability to express his or her wants, needs, ideas and feeling s in a variety of ways including gestures, sounds and words]
    • Speech/Articulation [The ability to pronounce speech sounds and coordinate speech movements]
    • Stuttering
    • Behaviour
    • Other [e.g. feeding/swallowing, motor skills]

    Wyatt rated "No concerns" in his social communication, which was no surprise to anyone here.  He is very vocal.  There were also no concerns with stuttering or his behaviour as well.  I was happy to see that there were no "Difficulties" noted;  most of the above was rated as "Continue to check progress".  The therapist provided a list of behaviours/activities/actions that she observed Wyatt performing that we are to continue to build on.  For example, under play skills, she indicated that he should continue to explore toys and working on being able to bang them together.  Under "Understanding Language", anticipating daily routines and attaching meaning to familiar terms were listed.  What do these have to do with speech you may ask?

    Language acquisition is a major part of our development.  In order to communicate, you need names for things.  We have words for thinking, remembering, knowledge, reasoning and communication.  By attaching meaning to a specific routine for example, such as "lunch", Wyatt will learn an important association. Children with Down Syndrome are visual learners, so attaching sounds (words) to a witnessed action is also an important part of this.  Hopefully, at some point, Wyatt will be able to hear "Where's Daddy?" and turn his head to find him.  To typical children, this is a very easy thing to learn.  Zoe has been able to do this for months.  For those with DS, it takes a lot longer as they have to develop each connection individually.  He has to connect Sean's "Sean-ness" with the sound of "Daddy" (which is tricky for sight learners;  he learns my mouth shape but the sounds I'm making might as well be an ambient radio on in the background for all the relevance they hold).  Wyatt has to develop the ability to think of the word "Daddy" when he sees Sean.  He also has to further his object permanence and his awareness of himself and other beings in space and time.  Our ability to learn language also affects our ability to develop memories;  with that in mind, he has to have the words "Daddy" and "Where" in his repertoire before he can start remembering where Daddy actually is.  Finally, he has to connect those words and a memory with an action of his own so that he can turn his head and look for "Daddy"... which, in itself will take longer due to the slow reactions of his muscles. 

    With my absence most of the time, it will be Daddy that Wyatt remembers more.  I will say that there has been great improvement since my return to work;  now, when I get home Wyatt greets me with the biggest smile and an enthusiastic giggle-shout.  A few months ago, it would take time for him to warm up to me after a prolonged absence.  In a little selfish sense, this stings a little, however in the bigger picture as long as he is making these connections, it doesn't matter who they are with. 

    There are days that I feel that I am missing out, it is true.  However, I stop and remind myself that I am fortunate to have my husband at home and that at least one of us is sharing all the major moments with the kids.  Quinn spent a lot of time in day care and as a result we missed a lot of "firsts"; that won't be the case here.  Not being home all the time makes what time we do have together that much sweeter and I can savour it that much more.  After four 12 hour shifts, his laughter is music for my soul.  He seems to smile with his whole being; he is almost radiant as he chases away any lingering blues that I might have.   As he continues to further his skills and starts to sprout teeth, we will be closer to that elusive "Mama".  Until then, everything he does gives us plenty to talk about.

    Don't forget to vote for Down Wit Dat as's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.  -Jxox

    Saturday, March 10, 2012

    What is this "Normal" of Which You Speak?


    Today is Saturday, a unique breed amongst the other days.  To many, it's the first day in their two days of respite from the rat race.  To me, a shiftworker, it's just another day.  Today, in fact, is day four of nine, where I am supposed to be cleaning the basement and the stairs.  Since my sciatica has been ranging from cripplingly painful to moderately bastardly in the last week, we can safely assume that isn't happening today.  Instead I will blog...

    Today's entry is made possible by my shiny new 'puter which came about solely because my other "laptop" decided to wink out and not display anything any more.  I say "laptop", as any sort of illusion that this thing was in any way portable had long since died out.  In the six years that it had been in almost constant service, we had first witnessed the demise of the battery which forced it to be plugged in at all times.  My then three year old son decided to play with it one day and in the space of 2 seconds had managed to rip off the "S" key.  It then became permanently tethered to both the wall and a desk as we had to plug in an external keyboard.  It has been moved from the basement to the bedroom and finally to the living room with the advent of the twins.  Where it sat, for many months, wheezing along with an external drive in situ, which kindly did all its major remembering for it.  Now, *poof*. It is blind.  Unfortunately, I have a whole whack of things on there that I did not back up and need to get off there before we either relegate it to the recycle centre or rebuild it for our son.  Yes, the same one that ripped off the S key.  The irony is strong with that one.

    Saturdays have taken on another meaning for me;  Special Saturdays.  Those familiar with Twitter lingo will recognize #CT (Charity Tuesday) #FF (Follow Friday) and the like.  The special need community has started another: #specialsaturday, in the hopes of raising awareness.  This week's topic is technology:  how much Team Logan relies on their technology was highlighted this week with the "laptop".  Not only is it a much needed source of respite and an outlet for me, but it is also the hub of the house.  (Thank goodness it is back...)

    My bloggy friend Renata over at Just Bring the Chocolate has come up with what I think is a brilliant way to spend a Saturday.  Unlike your typical blog hop, where participants jump from one to another to get to know other bloggers, she's added a twist.  A challenge, if you will.  Instead of dumping my URL and running ... er... trying to put your best face forward or whatever it is that you do, this time, there's work involved.  Renata has challenged us to "redefine normal".  I love this concept.  Love it.  In her words:

    "There is no such thing as the normal family, just varying degrees of weirdness. Just like the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day, after a while, we don't even see our own idiosyncrasies. Parents of special needs children, arguably, embrace this weirdness to a more impressive level than many other families, and, should you come across us, you shouldn't be surprised if some of it leaks out into everyday life."

    Oh yeah.

    We've always been a bit "off".  Even before children, my husband and I were geeks.  We are, what I like to refer to as "delightfully eccentric".  We read a lot.  We know a little about a lot of different topics.  I am creative without actually being an artist of any sort of description.  When our eldest was born, we just incorporated one more into our weird little herd.  Quinn, as it turns out, is really smart, funny, sensitive and really into arts and crafts.  If that kid ever figures out what he is really good at, he is going to be rich.

    We amped up the oddity factor when I conceived our twins.  Rare in itself, having twins brings on its own set of unique problems and creative solutions.  We've adapted behaviours for survival.  When one of those twins turned out to have special needs, there was a whole other level of urgency added to "adapt or be destroyed".

    To prove Renata's theory that we overlook our idiosyncracies, I had a really hard time coming up with one little thing that makes us unique (since we have adapted everything quite well into everyday life).
    I have been very fortunate that other than one surgery thus far with my "typical" twin, we haven't had to do much extra with Wyatt's Down Syndrome medically, other than go to a ridiculous amount of appointments.  By "ridiculous" I mean "mind bogglingly insane amount" as both kids have their own issues that require attention.  As they were 6 weeks premature, Zoe is followed by the neonatal clinic at the hospital.  We have a couple of appointments a year there as they evaluate her development.  She also has a Family Doctor, a Pediatrician and a Surgeon (who repaired her hernia).  Wyatt, so far, has the following:  a family doctor, a cardiologist, a cardiac surgeon, a pediatrician, an ophthalmologist, an ENT, an audiologist, a speech therapist and OT/RT/PT.  My kids need an assistant, which has handily come in the form of their stay at home Dad, another unusual thing about our family, when you get right down to it.  But, I don't think of these things, I only consider ourselves as fortunate as there are no tubes and wires with Wyatt; we have been spared the onset of CHF with his AVSD so far.  There have been no medications to give (other than mineral oil in his ears).  We have been "lucky".

    Furthering her concept along, I was wandering around the house doing this and that and trying to come up with what made us different;  as I was doing this, I kept having to rearrange, pick up or sort out piles of stuff.  In our house, "the pile of things that sits hopefully at the bottom of the stairs waiting to be carried up day after day" is literally just that.  Piles and piles of stuff.  We have piles and piles of extra things that parents of singletons, special needs or not, simply do not have to cope with.  For example, our main floor consists of a large eat-in kitchen and a combination living and dining room.  Since Wyatt and Zoe have come into our lives, I no longer have a living-dining room; rather I have an area with couches and a main floor nursery.  The table has been moved out, creating an open area for the kids to roll around and play in.  There is a play pen in there at all times, a ready "penalty box" or soft place to put sleepy little people.  In front of our antique sewing machine, there lives what I like to call our "therapy corner";  a collection of items used for Wyatt's daily PT that have either been adapted for the cause or brought for that purpose.

    Therapy Corner
    Our regular readers will recognize The Bean and The Speedbump.  Along with these are (left to right):  2 nursing pillows, a stack of pillows, two "banana" neck stabilizers, an infant anti-rolling brace thing, a rain stick, a blow up roller with balls inside, two Bumbos, two stuffed friends, a yellow happy face ball, a beaded wire toy that suctions to the floor, an infant head rest pillow, the safety mirror,  a tambourine, the gymini-jillikers, a spare bathtub and two Sleep Number bolster pillows.

    Any or all toys can be commandeered for the cause at any time:  we have four baskets that are about 1 foot cubed, full of baby toys that are jammed under the coffee table.  Stuff.  We has it.

    Team Logan is nothing if not adaptable.  It's "do or do not. There is no try".  Renata has brought a good point forward:  in all our trying to show inclusion, to show our "normalcy", we've started to overlook the little things that make us, us.  We've forgotten what it was to incorporate every adaptation into our routine and as a result, minimize the hard work that we do.  Along with inclusion, I think we have to celebrate that too.  We do work hard.  We don't want to lose sight of that, even if it is a labour of love.  We have our little quirks too.  So, time allowing, I will be participating in the "Define Normal" bloghop.  Once a week, we should have a time to reflect on our little peculiarities, to embrace our differences with a little whimsy.

    ...And lettin' our freak flag fly, baby.

    Don't forget to vote for Down Wit Dat as's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.  -Jxox

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

    Wednesday, March 7, 2012

    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 "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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    Thursday, March 1, 2012

    Better Living Through Peek-A-Boo

    I haven't been feeling very brave.

    I knew it was here somewhere...  It must be under the 19+ loads of laundry that I have dealt with (so far!) in the last 4 days.  Maybe I left it in my work bag?  Perhaps I kicked it under the couch by accident.  Whatever, where ever... the last couple of days I have been wandering around like the cowardly lion, looking for my courage.

    Courage really isn't the right word for it either.  Neither is "special" or "blessed" or any other adjective that people use to describe "Special needs Moms". You know that thing that makes my magic helmet and the proverbial double edged sword less heavy?  That. 

    The cause?  Nothing really.  Not any one thing and everything, all rolled up in puff pastry.  Probably a little bit of a crash too, as we are still coming down off the kids birthday's and Wyatt's new-found sitting prowess.  It happens.  No matter how hard you try, you do have days where you are worn down.

    I came to a realization the other day as I stood downstairs at my bar, waiting for my morning cup of Tassimo.  I glanced over at a stack of books and saw our copy of "What to Expect the First Year".  As I stood there, waiting for the last few drops of coffee to fall, I smirked and half chuckled to myself.

    There is no manual with a special needs child.  There is no manual for Down syndrome.

    I used this book religiously with Quinn, our eldest.  Each month, I was delighted with each new thing that he had picked up.  Most of the time, I lauded him for being "ahead".  As parents, we dream and delude ourselves all the time.  We aren't supposed to compare our kids with others, but we do it without fail.  "See that?  With that fine motor control, he could be a surgeon or a dentist!"  "With those long fingers, he could be a concert pianist!"  "He's three months ahead with his speech!  Let's hope he stays out of public office..." and so on.  Constant comparison, constant validation.  As the title says, I knew what to expect with him.  There were very few surprises.

    Zoe?  Pretty much the same thing.  She will always have the "six weeks corrected" with each of her milestones.  This makes it a little worse in a way, as "...she certainly isn't acting like a preemie!  Look at how far ahead she is!" 

    Then, there is Wyatt.

    With him I got a list of facial features, potential physical ailments and things he cannot do.  There is no set list for "can" or "will" or "when".  Information is partial at best.  There is no comparison, no handy yardstick. Instead of a book telling us "What to Expect..." we now have to embrace a whole new philosophy:  "In His Own Time".  There is no instant gratification with this one.  It takes a metric f☠ckton(ne) of patience and another still of sweat equity.  And time.  Lots and lots of time.

    To me, everything happens for a reason.  As the fates would have it, I lost "What to Expect..." until a couple of weeks ago. I remember looking for it frantically at a few points, hoping to find an answer to some obscure question or another.  It's being lost until now has turned into a blessing in disguise, really.  For all our good intentions, month by month, week by week detailed comparisons between the twins would have been inevitable.  Contrasts would have been more obvious.  The differences at various points would have been heartbreaking.  Instead, this book remaining lost for so long kept everything a little more vague.  At least in this one instance, a little bit of ignorance was bliss.

    I would not begrudge Wyatt a single thing.  Any dedicated parent will say that they would do anything for their kids.  I'm just putting my money where my mouth is.  Each and every thing has to be thought out; you constantly have to be aware of what skill you are trying to develop and what the ramifications are.  This morning for example, we had half an hour of controlled kneeling and quiet play therapy, followed by fun tambourine time.  I have learned that Zoe will be intrusive, no matter what you do;  while I am changing Wyatt's diaper, she is trying to step over him as she cruises around me and chatters.  Instead of pushing her away, I set her up on the double pillows too.  The babies got some face to face talking time as I gently held my sons hips and shoulders in alignment and his knees together.  They pulled a toy back and forth between the two of them, both of their chests on the pillow and when that became tiresome, Zoe rolled over and lay half propped on them, still chattering over her shoulder to her brother and I.  They each got a tambourine and after the usual back and forth trading between the two of them, I took a little time with each of them and explored the different sounds and actions.  Wyatt at first was sitting up, but he was obviously tired so he lay propped up on a nursing pillow and held his tambourine (and the maraca he was hitting it with) up over his head.  We patted, hit, shook and head butted our jingly noisemakers for a couple of minutes until Sean and Quinn returned and Zoe almost bowled me over as she ran for the gate, screeching for joy.  Sounds like a fun half hour, right?  The kneeling was to continue strengthening his core, getting his hips and legs ready to that unsupported and be able to get those knees under him so that he may learn to crawl.  Bringing his hands together and banging objects together are not milestones per se, but are important skills to refine as they lead to so many others.  Finally, connecting the dots between action and sound is an ongoing lesson, especially with kids with Down syndrome who are so visually oriented.

    With Quinn, I tried to add certain skill enhancing activities, just like a lot of parents, simply because I could.  If I forgot or didn't have enough time, it wasn't that big of a deal.  He picked things up very easily.  With Wyatt, I have to.  Like Yoda says "...There is no try."

    I found my "brave" last night.  Little did I know it was hiding under a blanket.  Wyatt would not sleep for love nor money and he was hanging out with us downstairs.  I had a fire going and a glass of wine in my hand and I was getting a little bit discouraged with him as he would not sleep, despite my best attempt at a Zen atmosphere.  I took another sip and started scrolling through my phone.  I heard a "YAH!" and looked over.  He grasped the edge of his blanket in both hands and pulled it up over his head.  Tired, (as we have been working on peek-a-boo games since they were very young) I gave a half-assed "Where's Wyatt?", only to have him quickly drop the blanket and grin at me.  I could not have been more surprised.  I gave him the "There he is!" and looked over at Sean.  He asked  "Where's Wyatt?  Where's he at?"

    The blanket went up again.

    Then it came down.  "THERE HE IS!!" we both yelled in unison. 

    We did this for a good ten minutes.  Sometimes he would peek around the edge of the blanket and grin at me.  Sometimes he would get distracted by the TV and then yell at me and make different sounds at me to continue our game. He would go back and forth between both of us.  It was awesome.

    I know... it's just peek-a-boo, right?  Not really.  See, much like our kneeling and tambourine time, it means a lot more.  It gave him an opportunity to communicate with us, one that he initiated himself.  We got to make eye contact and react to one another.  It also showed us that he is working on object permanence, that he has made the connection that when his vision is blocked by something (in this case the blanket), we and the world still exist.  As this is a visual task, it is not surprising that children with Down syndrome progress with it faster.  He showed us that cognitively, he is coming along.

    For us, it was a much needed shot in the arm.  Physically, the evidence was there that he was progressing.  Now we have proof that everything else is too.  Each little step answers a few more questions and gives us a little boost that keeps us going.  Forget chemistry, we have better living through peek-a-boo.

    Bravery?  Where are you?

    Oh there you are!  I see you...

    Don't forget to vote for Down Wit Dat as's Reader's Choice for Special Needs Parenting Blog.   You can vote once a day, every day until March 21 using an email address or signing in through Facebook.  You can vote HERE.  -Jxox
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