Monday, January 30, 2012

In the News - January, 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 hope and of love.  These are from the month of January, from oldest to newest.

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

HAC to Host Special Traveling Exhibit

Fleming Island Boy Named A Citrus King, to Ride in Orlando Parade
STUDY Oxidative Stress and Down Syndrome:  A Route Towards Alzheimer's-like Dementi
VIDEO Retarded
VIDEO Down Syndrome Man Earns 1st Degree Black Belt

Being Retarded

Target Uses Special Needs Child in Catalog
BLOGBeing Retarded (The Full Post)
VIDEO Not Acceptable R-word PSA

Teenager with Down Syndrome Competes with Saucon Valley High School Swim Team
VIDEO Down Syndrome Awareness - Maddox Lucille
My Son Can See Dragons

My Brother's Valuable Life 
BLOG Just A Word 
BLOG Disability Life:  Stephen and the R-Word
Spread the Word
VIDEO One Year Down This Path - A Father's Perspective on Down Syndrome
Parental Perceptions of Sibling Relationships in Families Rearing a Child with a Chronic Condition
STUDY Gamma-tocotrienol does not substantially protect DS neurons from hydrogen peroxide-induced oxidative injury
VIDEO McGill Dances for Cancer Research LipDub

Bullied boy all smiles after operation to fix ears
BLOG January 23: International Day of Mourning and Memory

Louisiana Toddler who Battled Disease Dies in Mother's Arms
PHOTOS Message to all my FB friends!  Look at pictures in order
VIDEO Lily's Story - Down Syndrome awareness
PHOTOS A Thing or Two about Twins

Virgina Lawmaker:  Children with disabilities are God's punishment for women who previously had abortions
Music, a universal language

Carrie McLaren:  Pride replaces fear for special needs mom

Poppin Joe's Kettle Korn

If People with Down Syndrome Ruled the World

How to Raise a Child with Down Syndrome:  Advice and Resources

Brick Walls
BLOG A fair warning before you see "The Descendants"
BLOG Suj's Site
BLOG There's Nothing "Down" About Having a Child With Down Syndrome
VIDEO Lauren Potter talking about Glee, Justin Bieber and R-Word
BLOG Cousin Mattie:  The International Day of Mourning and Memory

World Down Syndrome Day at UN - 3/21 - "Building our Future"

Two Women with Down Syndrome Finish Rose Bowl Half Marathon

Down's Syndrome Youngster to Serve in Israeli Army
STUDY Memantine Strikes out with Down's Syndrome

Museum of Learning Disability
LINKS Disability Scoop

Talking things through in your head may help autism
VIDEO Brighton grad with Down Syndrome lives to learn and help others

New Trier Teen Stars in Hallmark Hall of Fame Movie this Weekend

Superbowl Sunday Super for Jacob
BLOG Lauren Potter!  Glee!  SAG award nomination

A birthday wish for James

Zeb Olko Recieves College Scholarship

Down Wit Dat was featured this month:

"Welcome to the Family, from Down Wit Dat Blog" on dimmi

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

Thursday, January 26, 2012

Down, But Not Out

As I was pulling on my "Mom uniform" this morning (yoga pants, random oil stained T-Shirt, slightly too-tight hoodie, raggedy pony tail), two things occurred to me.  The first thought involved cursing with the realization that I was going to need socks (AKA Satan's footwear) for my eventual run to Costco.  This irritates me every time as I abhor socks and rarely wear them.  Even in January.  In Canada.

The second thought involved a bunch of new information about the twins, especially Wyatt.  Miracle upon miracles, the socks came easy, the Costco run (and most of the day) is over, the socks are off again.  Here I am, ready to share.

Last Wednesday, Wyatt had a trip to the cardiologist.  I was a little antsy as this was the first trip that Hubs had to do on his own (as I was at work).  In typical Logan form, the entire thing was a fiasco.  I won't spoil his story, but I will say there was a garbage truck, a bunch of staring people and a broken elevator. There was also some unexpected news.

At our last visit, we were told that we were looking at pushing Wyatt's surgery off to somewhere between ages 3 and 4.  As of this visit, the plans have changed.  There is some concern about the relative pressures in the chambers of his heart.  The thinking now,  is that since he is doing so well (and is still largely asymptomatic), that we will be doing his surgery sooner rather than later.  We are waiting for an appointment with the surgeon at "Sick Kids" (The Hospital for Sick Children) who will assess Wyatt and ultimately make the decision on when he will do the surgery. 

Let's just cut to the chase and say this was not the results that I was looking for.

I don't know why, but I was hoping that the hole in his heart was closing, or was doing so to such a degree that we could wait a few years.  I know, it is a long shot, but with the results that we have had so far, a mother can hope.  And I did.  What else could I do?

Sean called me at work when he got home from his doctor adventure.  I have a post-grad student currently, and all he heard me say after "How did it go?" and a long pause was a tiny "oh".   Despite the presence of logic, despite my understanding of the situation, it still felt like something had kicked me in the chest.  No matter how straightforward this surgery is going to be, I still don't have to like it.

Once we have a surgery date, we can start planning;  without that date, things are pretty much up in the air for the next, oh, eternity until we have that particular date.  I am trying very hard not to let that stress me out.

Tuesday morning, we had another double booking adventure.  Fun! (No, not really...) Wyatt's therapists were here Monday and as far as we knew, we only had our eldest son's parent teacher meeting at 8:30 am the following morning.  Right in the middle of the session, we got a phone call from the pediatrician's office reminding us of our appointment the next day.  At 9:30.  At the opposite end of town.  Yikes!

Our day went something like this: both got up, he got eldest ready for school and then took him there for the parent teacher meeting.  In the meantime, I got the babies up, fed, dressed, bundled and in their car seats, ready for Sean's return at around 9.  We loaded everyone up and shot across town.  We were only a few minutes late (thanks to the worst parking lot EVER) and only got the secretary's half-assed snarky disapproving face.

Once in, it was another episode of unloading, undressing, handing off and handing back of babies as we got them weighed and ready for the Doc.  Wyatt is currently 14 lbs, 13 oz while his "little" sister is now 16 lbs, 14 oz.  Zoe is also 2 cm longer than her brother.  The effects of the hypotonia and delay are getting more noticeable.  However, on the positive side of things, both are growing steadily on their prospective charts.  The pediatrician was impressed by Zoe's level of mobility and Wyatt's current functioning (learning to sit, discovering feeding himself and chunkier textures, no choking, happy as a lark).  All was going pretty swimmingly until Wy's physical assessment when she found tiny petechia on his chest and sent us immediately to the paeds clinic at the hospital to get his platelets checked.

[Record scratch] Pardon?!

I know it sounds innocent enough, just a little poke for some blood work, but to me it was a whole lot more.  One, the last time the pediatrician said "oh..." and pointed at something, Zoe ended up having surgery.  Second of all, thrombocytopenia in an 11 month old (6 weeks corrected) boy with Down syndrome could mean any number of things, up to and including leukemia.  People with Down syndrome have a low risk of most cancers, but they have a high risk of leukemia.  If it wasn't that, what was it?  How would this impact on his eventual heart surgery?  Was it related?  My head was spinning and my chest was tightening up as Sean dropped myself and the babies off at the hospital as he went to retrieve Quinn from school. 

I had to hold him down, which was anything but pleasant.  We are so lucky that he is a tough little guy as after a few snuggles, his big tears dried and we hung out to wait for results.  Both babies snoozed in the stroller while I texted the BFF madly as we swapped medical diagnoses and mega-grease lunch ideas back and forth.  After half an hour, I returned to the clinic.  I was only there a few minutes when one of the nurses called me over and told me his bloodwork was fine.  I swear my knees buckled in relief, but I'm sure all they saw was my grip tighten on the stroller as I exhaled.  The pediatrician had added a TSH to the order set, (simply because he would have that tested at about a year) but that would not be back for a while.  Since I had the info that I wanted, I chose to go home.

On the way home we totally greased out at Burger King.  Whopper, poutine, coke and an hour later, another damn Whopper.  Yes, you heard me.  I consumed enough calories to feed a family.  By the time I was headed for my nap (in the hopes of getting my chest muscles to stop hurting), the office had called to say that all the bloodwork was fine.  Thankfully.  Thank you universe... who/whatever is listening.  Thank you.

The last week has been riddled with drama.  In all fairness, we've been lucky for a while;  I guess it was our turn.   Like any parents, we get knocked down from time to time.  Without trying to sound like a Chumbawumba tune, we get back up again.  And again.  And again.  We have to.  For ourselves and for our family's sake.  Once we get our date, we will plan and it will all fall into place as it should.  It will suck, but it will happen and we will get through it as a family.  Of that I can assure you.

But, as the song says, I get back up again. You're never gonna keep me down.  Even with stupid socks.

Sunday, January 22, 2012

Seeing Double

Snoozing in a sunbeam

Having twins brings on a unique set of circumstances.  You sleep less, you multitask more.  You learn who your friends are and how much stuff can actually fit into your house.  You rival any Time Lord with the ability to manipulate time and space.  You learn very quickly that if it isn't crying, threatening collapse, bleeding profusely or actually on fire, it can wait.

You also learn that these separate-yet-together little people are giving you a myriad of little experiences that you will never see or fully appreciate otherwise.  The snuggling.  The sharing (and then fighting) over a soother or toy.  The back and forth cooing communication. The constant awareness of the other and the attempt to touch or placate when one is upset. It is breathtakingly, mindbogglingly wondrous and will make you smile and your chest ache simultaneously.

Welcoming both the "sames" and the "differents" just comes with the territory.  My twins do share many things.  They love music.  They are both cuddlebugs.  They both hate spinach.  Wyatt and Zoe are fraternal, so there are some obvious differences too.  One is a girl, one is a boy. One has a penchant for soothers ("tookies") and one prefers their thumb.  One is very fair and blue eyed like his older brother while the other is olive with dark eyes like her mother.  One has the usual arrangement of chromosomes, the other has an extra 21st.  It is accepted that one will be whatever she sets her sights on and will get there through her own determination.  In some circles, it is still accepted that the other will not amount to anything.  (We don't belong to any of those).

My twins are a little more unique than most as I have moved from having two infants that are doing almost exactly the same things to two babies that are at different levels of development.  Both are still small for their age, but my daughter, the "typical" twin is now growing out of her 3-6 month sizes and has moved on to a larger size diaper.  She is muscular, strong and bulldozes her way around a room.  My "atypical" son is a little behind her in size, is still fitting into most of his 3-6 month clothing and is just pushing himself up on his hands and learning to roll in both directions.  She is actively shoveling finger foods in her mouth, he is still trying to accept chunkier textures.  They are still together, but are now totally different. 

We knew this time was coming... a time where the gap between their levels of development would be too great to not address it.  It was one thing when they were not completely mobile, but now one is only quasi mobile and the other is almost walking.  Play time together gets a little tricky when one is actively cruising [read: destroying] the room and the other is having tummy time.  It's hard for them, it's hard for us to watch.  It's hard for Wyatt when he is enjoying a toy and Zoe takes it and goes away with it.  However, it is things like this that give him a little push to to move more and stand up for himself.

Our "parents of twins" insanity has yet to abandon us.  We still seem to have some sort of unspoken connection to random strangers that have two or more the same age.  Our schedules have not settled down any; we seem to outgrow one thing and then find something else just as time consuming to fill it's spot.  The laundry has just gotten bigger.  We find our tempers shorter.  Meals, for example, now seem to take forever.  It's weird, but I find myself missing the days of just latching them on anywhere and then topping them up with a bottle on the go.  Now, there is furniture involved, there are "discovery appetizers" (Special K or Rice Krispies to help him with his tongue and help her with her pincer grip), a main course of at least 3 oz each of food (prepared by us), plus rice cookies (mainly for our mini-scream queen) and then a session with me or a bottle.  There is more laundry involved in the form of bibs; we can't go to the plastic ones yet as they are still too large.  There is a prerequisite hosing of them both at the end and then it's time to set them up for an activity.  It's a lot.  We don't go out much.

There is a lot of similarities between parents of twins too.  Good friends of ours have twins; their boy and girl have grown up with our eldest.  Everyone was over last Saturday for some hair-apy, kid time, baby-snuggling and football.  There was a point when all four parents were in the kitchen making dinner plans when we all realized that none of us had really eaten all day.  The final tally:  three bowls of cereal, two cups of coffee, a few chocolates (swiped from the kids) and several glasses of pop or ice tea between four grown adults.  It was pathetic.  The reason?  We had been feeding kids all day.  Breakfast, lunch, snacks and now dinner. Somewhere in all the prep, serving and cleanup we had all forgotten to feed ourselves.  That wasn't the scary part;  that honour was saved for the fact that we all shrugged it off as commonplace and descended on our dinner like vultures.  The "hair-apy", by the way, was to combat one of the other hazards of twin parent-ship:  grey hair.  We get it in droves.  Thankfully, only my hairdressing girlfriend knows exactly how much I really have.    At least one of any twin pair will be the "danger baby"...   We have Zoe.  She is constantly trying to climb, constantly bashing herself on any available object and has already had one run in with the stairs.  I swear by all that is holy that I can actually feel them turn grey (or just fall out) now.  Today I heard some animated babbling and turned around to find this: 

"Whadd'ya mean this isn't made for two?!"
I'm lucky I have any hair left.

We are rapidly approaching their first birthday and moving on to exciting new stages.  There will be teeth. There will be talking.  There will be simultaneous tracking of multiple moving targets (Oy!).  There will be a lot of fun and a lot of joy... and a lot of spills and tears.  There are a lot of not-so-nice things on the horizon for my little tribe but we will see through to the other side of that.  The one thing that all of us have in common is each other.  Regardless of how ugly life may or may not get, that in itself makes us rich.  Doubly so, if you think about it...

Tuesday, January 17, 2012

There Be Monsters

Through the 11 months (!) that my twins have been on this earth, I have been exposed to many things and many new concepts.  Along with my "twin mom" hat came a "special needs mom" hat and there have had to be some accompanying adjustments.

It's the second hat, my "special needs" one that has forced me to consider quite a few things that, in my own ignorance, did not even occur to me.  It never even crossed my mind that in this day and age, there would be people that did not even know what Down syndrome was;  however, I have found myself explaining it numerous times over the last year or so.  I don't begrudge this either, as it gave me an opportunity to present it fresh, in a positive light as opposed to dispelling myth.  I myself have had to unlearn and relearn a few things about DS.  When my daughter needed surgery for her inguinal hernia at 6 weeks, there was no doubt in my mind that she would receive exceptional care.  When my son was diagnosed in utero with an Atrioventricular septal defect (AVSD), there was no doubt in my mind that when the time came, he would receive the surgery he required in one of the leading children's hospitals in the world in Toronto.  It was never questioned, as why wouldn't he?  It never crossed my mind that this was never an option for a child with Down syndrome.

Then, a few days ago, I learned of Amelia, a  girl who lives in Philadelphia.  She is a little girl with a very rare genetic disorder known as Wolf-Hirschhorn syndrome (I had to look it up too).  It manifests itself in a variety of medical considerations and some global delays, just like Down Syndrome.  I know about her as she requires a kidney transplant or she will die... and she will die, as she has been refused the operation.  She has been refused a life saving procedure as she, in the words of both the facility and the surgeon, is "mentally retarded".

According to Amelia's mom, Chrissy, even though the family offered to find a donor within itself, the surgeon refused to perform the transplant due to Amelia's "quality of life".  It's not just the doctor either, as this is apparently a matter of hospital policy.  You see, "mental retardation" is a criteria for exclusion from a transplant procedure, like Hepatitis C or HIV.  In fact, it's listed on the form, just under those exact two things.  This was brought to the attention of Amelia's parents, thanks to the stroke of a pink highlighter.

I'm not even sure I can adequately express how shocked I am and to what extent.  You have to understand that I live in Canada, land of universal health care.  Immediately I thought "it must be just that hospital" and began digging.  Then it became "it must be that state" and kept reading.  Finally, it became "this would never happen in Canada".  Well, I was wrong there too.  It has only been in the last while that even surgery to repair defects was an option for kids like Wyatt, never mind transplanting an organ.

In my research, I came across the story of Sandra Jensen, the first woman in the world with developmental delays (specifically Down syndrome) to receive a heart-lung transplant at Stanford University Medical Center in California.  In 1996, 15 years after the first heart-lung transplant at the same facility, long after such a revolutionary surgery had become a matter of routine.  Sandra, an outspoken activist, volunteer and valued member of her community was initially denied the surgery due to her "quality of life".  She, and her family, had to sue the hospital in order for her to have her procedure. Sadly, Ms. Jensen died 16 months afterwards, not from non-compliance, not from rejection, but from a rare form of cancer that can accompany transplants.  Related to this is an international study from 2006 that shows that success rates among those with "MR" or developmental delays are equivalent to those who do not.  Bonus: the study looked at the most common type of transplant, kidneys.

Amelia's parents were told by the staff that it was her "quality of life" that was to be considered and it was put forth that they might not be around in the future and "who would make sure she took her medications then?".  There are two major points here I would like to address.

The first is the phrase "quality of life".  We use this in medicine a lot as a sort of blanket statement to convey a list of complex thoughts surrounding a person's treatment, level of comfort and/or happiness.  Amelia is just shy of her 4th birthday and I'm sure, like other kids with a developmental delay, has a little catching up to do.  At this point, her parents do not know what she will do or achieve as an adult any more than any parent of any pre-school age child.  Is she suffering?  Yes, currently from kidney disease.  Would a transplant alleviate that?  Yes, it would.  She would have a treatment regimen of certain medications (that have manageable side effects).  She will then live, and grow and learn and yes, even be happy.  Am I wrong in assuming that would improve her "quality of life"?

The real issue here is the underlying text:  "Amelia is delayed and therefore broken".  If she has the surgery and takes the anti-rejection meds, she could theoretically have a seizure, which theoretically could deprive her brain of oxygen and cause her brain damage.  It's ok to impose this on a "normal" child, but "her brain is already damaged" (the surgeon's words) so theoretically she could end up very very damaged, or dead.  Theoretically.

What isn't theoretical is that dead is what she definitely will be without the transplant.  She will go into kidney failure and be made as comfortable as possible, given the circumstances.  The comfort measures, by the way, will be given out of respect to her "quality of life".  I can't be the only one that sees the irony here.

Along with this is the assumption made by the staff at CHOP that a grown Amelia would be unable to care for herself, specifically, she would be unable to remember to take her medication.  This is a blatant example of the type of discrimination that delayed persons face every single day.  We don't know that any more than any other kid.  We can't see into the future.  My BFF is a Diabetic Educator and she has many delayed patients, most of them with Down syndrome.  She lights up like a Christmas tree when these patients visit.  Despite their varying level of functioning and unlike the rest of the population, these patients are compliant with their treatment regimen, take it seriously and do as much as they can to better themselves. Most of her patients cheat on their diets, don't take their insulin or diabetic meds properly and always think they know better than her because, after all, she is just a nurse.  Her special needs patients make her day and it always makes me smile to hear it.

My mental health patients vary in their degree of functioning due to nature of their illnesses.  Are they not worthy of life saving transplants?  I have similar stories to my BFF as some of my "lower functioning" patients are more compliant and hold jobs and contribute to their community.  I wish I could say the same thing about some of the "higher functioning" ones.

Every special need parent, when they get that new hat, considers the future for their child.  I have touched before on some of the financial considerations that have to be addressed and how easy they are to achieve.  The idea that Amelia's parents have not considered this is laughable, the idea that a social worker would suggest this as a reason that this girl would be denied a new kidney is insulting to both this family, to all special needs families and to social workers in general.

I hope the ethics committee reconsiders their decision and I hope this family finds another surgeon.  I also hope that the medical community looks a little more closely at bio-ethics in relation to the special needs community.  I dare say, they will find a lot of work to do.  There still be monsters in them thar' waters.

Dave Hingsburger, a special needs blogger, has put forth in a recent post the suggestion that January 23, 2012 be the first International Day of Mourning and Memory of the Lives of People with Disabilities. The date is no accident;  it is the day in 1996 that Sandra Jenson received her transplant.  In his words:

"The day would be one of remembrance of those whose lives were not celebrated or remembered, the lives of those who were slaughtered by care providers or brutalized to death by bullies. It would also be a day to remember the entire disability community - the elders who came before and who made the world different and better. It would be a day where a moment was taken to pause and reflect and remember."

I like that.  

So many people with developmental delays are still hidden away, world wide, to this day.   Despite all our efforts, there is still so much work to be done.  So many lives to celebrate.  So much predjudice to dispel.

I hope that we are not too late and I hope little Amelia gets her kidney.  She is a little girl with a visual intellectual disability and because of that, does not qualify for an organ transplant.  Amelia does not live in some far flung third world country, but in the US.  Amelia deserves to live and to grow.  She deserves the ability to explore her highest potential.  As do all children with developmental delays.

There be monsters, all right.  And they are us.

I will be observing January 23rd.  For Sandra, for Amelia, for the hundreds of thousands of kids like Wyatt who unlike him, did not get the chance to feel the sun on their face or fall asleep in their mothers arms.  For those locked away and hidden from view, for those left to starve.  For those denied medical care that is readily given to others.  For those denied their basic humanity.  For those parents and advocates that have had to sit helplessly by and watch it happen.  For those humiliated and shamed by a thoughtless public who continues to dismiss developmentally delayed individuals and their struggles to achive equality.  It will be for them.

I hope for Amelia's sake, that we are honouring more than her memory.

Thursday, January 12, 2012

Therapy Thursday: Workin' It!

It's been a while since I gave a proper update on Wyatt's progress.  That's not due to anything other than time, or rather, my profound lack of it.  Then there were things like holidays and anniversaries to consider... and, well, I fell into that trap of thinking that there wasn't much to report over all.  However, since the end of November, our little guy has made some strides.

Wyatt is still working on rolling both ways and "pushing up" on his hands.  Like his siblings, he seems to be more intent on discovering his verbal prowess, so it has been a bit of a frustrating couple of months to not see much improvement.  This is typical for Wyatt... plateau, plateau, plateau... and then boom!  Mastery! 

We have been continuing on with his positioning and gentle resistance.  Along the way, we have added a few things of our own that the OT's have approved.  He and his sister have a ton of toys;  some of the more simple ones such as heavier rattles and weighted balls have really helped to develop his eye-hand co-ordination (especially as he moves things from one hand to the other). Toys such as blocks have helped his grasp and a little ingenious configuration of plastic links has helped both his grasp and build his arm strength.  Wyatt likes to grab your pinkie finger in one chubby fist and your thumb in the other and "drive"; with this in mind, Sean put together an inverted Y shaped configuration of plastic links, where he held the single strand and Wy grabbed one side of the V part in each hand.  With that, we would then gently pull on the links and Wyatt would pull back, creating resistance.  We were amazed initially at his determination to pull on the links until we discovered that he was just trying to get them to his mouth to chew.  Amused, we let him have a little nibble now and again, just to reinforce a sense of accomplishment.  Even though pushing himself up has proven to be a bit of a stumbling block, he can quite contentedly rest on his elbows, shift his weight to one side, grasp a toy, chew on it and switch hands and comfortably shift his weight to the other side.

Casually shifting his weight
from one side to the other
so that he can play with his
version of free weights
His pivoting still needs some work, but is coming along.  He still prefers to roll to the one side, but we are encouraging him (with rolling exercises) to go the other way as well.  He can do both, he just prefers not to.  I personally don't have a full grasp of his rolling capabilities as I seem to always miss most of it. I sit and wait for him to do it, I get distracted and poof!  He is across the floor.  For all I know, he can teleport.

We are working with him, to some extent, every day.  Even if it is only a few minutes here and there in between the rest of the functioning of my crazy-busy family.  Mornings after breakfast seem to be the best time for him as he is alert and energetic (somewhere around 10:30 and 11, after cleanup and getting dressed).  He has a good hour or so of floor time which, in itself, helps him develop and grow, but we throw in a few exercises just to help him along.  Our workers (there are two of them currently, our regular worker and her student) are also OT's and they have begun visiting us twice a month to follow his overall progress.  Usually it is monthly visits, however we are getting double service because we have twins and a student available to us.  Either way, the time between visits allows progress to be assessed a little better as it is more noticeable.

Initially, we started with blanket or towel rolls.  Being a nurse, I'm an old hand at blanket rolls and can prop/secure/restrain anything with a blanket, anytime, anywhere.  We would use them to prop under his chest to help him raise up, we would put one on either side of his hips to keep his legs straight and not "frogged" (he likes to rub his feet together when he is lying on his tummy), we would use them to sit him more upright in his high chair.  We still use them for the latter, actually, especially if lunch is after a long exercise session and he is a little droopy.  Then, along came an object that we affectionately refer to as "The Speed Bump", which is a vinyl bar that, well, looks like a speed bump.  It can be used for a variety of things, up to and including propping him up on his hands and helping him sit.  He's not really a fan of the Speed Bump, and after a short time will tire of it.  I finally saw him pivot for the first time one day as he decided that he had enough time of the Speed Bump being under his chest and arms, pushed himself carefully down and to the side.  He then put his head down and promptly had a nap.

Wyatt working on his core
One of the more welcome additions to his routine in the last couple of months has been "The Bean".  Exercise balls are routinely used for developing balance and core strength;  kids with hypotonia are no exception.  We tried a few shapes and sizes out with Wyatt and found that an oval shaped "ball" with a slight depression in the middle was what worked best for him.  With "The Bean", we can work on his core strength and balance just by having fun with him.  For example, laying him on top of the ball and holding his feet and rolling it forward (while saying "Wheeee!" of course), he automatically pushes himself up and utilizes his head, shoulder, back and arm muscles to steady himself.  We also sit him on the Bean and holding his waist, bounce him up and down (he LOVES this).  I will say that once the ball/Bean was introduced, he did have an exponential jump in his balance. Within a two week period, he went from a floppy, bean bag baby that would nestle into your shoulder to a stiffer baby that would hold himself away from you when held him. 

Also in our regimen is a safety mirror which adds more fun and discovery to our exercises.  We like to put it on the floor and when he is getting tired on the Bean, it gives him something new to discover.  Since the introduction of the mirror, he will now try to put his hands flat on the floor (mirror) as he rolls forward.  We also use it across his lap when he is sitting to provide a little more interest into his grasping and banging of objects (and distract him from the idea that he is sitting). He loves to look at himself in the mirror, always has.  Our counter in the bathroom where he gets his bath has a huge mirror behind it; he watches us in the mirror and as "the other baby" have his tubby.  It wasn't a big stretch then, to incorporate it into our play and therapy sessions.

It may seem like a lot of work, having daily exercise sessions, but it really isn't.  Unlike traditional physiotherapy, we don't have pack up and lug him off to yet another appointment that he may not be receptive to, depending on the time of day.  Instead, we do it at home on his schedule and our therapists come to us.  This is important as we have a kindergartener who goes half days and Wyatt's twin Zoe who is hell bent on making what is left of my hair, grey.  We also make things fun.  Therapy isn't therapy, it's playtime and often all three kids are involved.  My eldest especially, as he keeps a critical eye on us to make sure that we are doing things right to help Wyatt with what he refers to as his "floppy-gitis".  Quinn came up with this term all on his own one day;  he was sitting beside me as I manipulated Wyatt into another position and he asked me what was wrong with him.  (We had already had quite a few) talks about DS.)  Being the Mom that I am, I answered "what do you think is wrong with Wyatt?" After a pause, Quinn looked at me and answered "I think he has floppy-gitis".  Not surprisingly, it stuck (and it was all I could do to keep from laughing).  At Christmas, my brother visited and I encouraged Quinn to tell his Uncle "what was wrong with Wyatt" as I thought that Bro might get a kick out of his nephew's clever terminology.  My whole plan backfired on me however (and demonstrated what a brilliant advocate he will be one day), as my son gave me a very long look and leveled his gaze on his uncle to report--in the most patient voice ever--"Uncle Bill, Wyatt has Down Syndrome". 

I had to leave the room. 

Like anything else, we've made Wyatt's therapy an adventure, one that we can all take part in.  Making it fun only serves to ensure that we participate as often as we can and that he grows up appreciating at least some forms of exercise.  It is frustrating at times and the results are slow at best.  But, the results are there.  They are visible in his thicker legs and stronger, steadier upper body, they are palpable in the muscles of his back as we pick him up.  Although I never seem to be able to watch him roll and pivot about the floor, he is doing it and managing to turn himself around (in fact, he will do this in his crib and I will find him stuck with his feet out through the bars).  As his arms grow stronger, as his back and legs develop more, the closer he is to crawling and walking.  We will get there eventually.  It will take time, but we will get there... One Bean-y bounce at a time.

Friday, January 6, 2012

What a Year a Difference Makes

One year ago today I was sitting in a neonatal cardiologist's office watching fish.

There were a variety of goldfish and a large sucker fish who was avidly doing its thing as it hung on the side of the glass.  It sat there, mesmerizing me and munching on microscopic algae as its tail waved in the current.  The hum of the filter provided balm to my already fraying nerves;  my aunt had passed away a few days before and I had just heard that a dear colleague had been almost killed in a car accident.  My belly had grown to enormous proportions and I could barely walk, stand or sit.  I was ignoring the itchy/sweaty/squeezy feeling my "batman" support tights were imposing on my lower half in the fight to keep me from getting a blood clot.  It didn't matter.  I was the sound of one hand clapping.  I was Zen.  I snapped out of my daze only slightly when my name was called and ambled into the office, a lazy smile on my face.

Less than half an hour later, Zen would be replaced by Stunned with an Underscore of Building Panic.  An echocardiogram on both my unborn babies had shown that baby B, my girl, Zoe, was fine but baby A, my boy, Wyatt, had AVSD and probably a chromosomal disorder, most likely Down syndrome. If the doctor had leaned over the counter and slapped me with a dead fish, I would not have been more surprised.   I listened and made notes and teared a little. I (somehow) had the presence of mind to write things down, as my memory was shot and I knew that my relative calm was momentary.  That stunned feeling got me into a cab and got me home.  Once inside the door I half tore off my coat and finally collapsed, sobbing.  It was an ugly cry, a guttural cry.  Definitely a contorted 'wild horse face' cry.  I was completely oblivious to time and space and the pool of dirty, salty water that had melted off my boots and was currently soaking my pants.  I was alone and completely helpless and beyond any hope.  You hear people say things like "it felt like my heart was ripped out" and you think "really?", but this... this is pretty much as close to the truth as you can get.  Your chest aches, you can't breathe and you have that discombobulated feeling that you are teetering and about to fall, about to slip into unconsciousness or death.   The room was spinning to keep up with my racing thoughts. All the reassurance from the genetic counselor in September was pointless.

They were wrong.
My son was disabled.
He was less than perfect.
My son, my baby boy, might die at worst or be delayed at best.


Why why why why why?....

Why, when I had done everything right--when many people do drugs and all sorts of horrible things when pregnant then go on to have healthy babies--I have this happening to me?  I pulled myself up to the island and half-collapsed again and cried into a stack of bills and junk mail, all the while still clutching my keys. An indeterminable amount of time later, I stood up, hastily wiped away the tears and trails of snot and cleared my now sore throat.

I had phone calls to make. 

It's been a full year and I still tremble a bit when I think of that day.  That day was really Day 1 of my New Year.  Day one of My Year of Down syndrome.  In the subsequent weeks my panic would lessen as my knowledge grew.  As my understanding and acceptance grew.  As my network grew. As I ultimately got over myself.

During this time, I've done a few things.  I've created this blog and found a little bit of therapy and a whole lot of coping for myself.  I'd also like to think I've become a better writer in the process. If the emails and PM's and comments are to be believed, I've touched many.  When someone contacts you to say "I don't know anyone with Down syndrome and I don't have any kids and I found your blog by accident when looking for wine blogs... but I really like your stuff", I think you can say that you are doing something right.  With this blog is the Facebook page, the Twitter feed, Pinterest and the poor neglected YouTube channel.  Between all the social networking, the research, the kids and my full time job as a Mental Health RN, well, let's just say life is pretty full.

My personal support system has expanded as well.  During the course of the year, I've met up with (both in real life and virtually) parents of children with Down syndrome.  Now, my network stretches across the planet, from the UK and Ireland to California to South America and on to Australia and the South Pacific.  It is unbelievable, it is fantastic and so comforting to know that we are all united in this one thing.  Almost everyone has a story like mine;  they can remember the day they ''found out" in crystal clarity.  Sometimes it was ahead of time, more often than not, it was in the delivery room or in the NICU.  We all have different levels of understanding, our lives have taken many different paths and we all certainly don't see eye to eye.  But we all share this one this one thing.

We've seen a wave of inclusion in this time too, from home coming kings and queens to cheerleaders and swim teams.  The latest is a boy named Ryan, who appeared in an ad for Target.  We don't have Targets here yet (so I haven't seen the ad first hand), but they are on the way this year.  I look forward to supporting them in the future if they continue with such inclusive advertising, although, being Canada, we'll probably end up calling them "Tar-Jzay".

The biggest thing this year, no surprise, is the babies themselves.  Zoe, Wyatt's "typical" twin is bent on being Daredevil.  She is determined to make her own way as, unlike her brothers, she is an almost walking, almost talking marvel at 10 mos.  No one told her she was "6 weeks corrected", and I'm pretty sure she wouldn't listen if you did.  Wyatt has beaten quite a few odds himself, other than the 0.003% we were given as the chance he had DS in the first place.  His AVSD is quite balanced and has proven to have little or no effect on his development.  The boy that was supposed to be in congestive heart failure by one month and needing open heart surgery by 3-6 months has pushed off his surgery to 3-4 YEARS of age.  We have a cardiology appointment coming up this month and we will see if what I think (and hope) is actually happening:  that he has pushed his surgery date back even farther.  We work on his muscles daily and he sees the OT twice a month.  He has gone from a fearful unknown to a 4lb, 13oz baby with no muscle tone and an upside down ECG to a thriving 15lb (-ish) ten month old with sparkling eyes, a sense of humour and the ability to charm everyone around him.  He, himself, is the greatest accomplishment of this year.

We've all come a long way from my puddle on the kitchen floor.  Patience, time and education have gotten us all here;  these things will sustain us through the years to come.  We have learned to embrace all of our children for who they are, especially our twins that are so radically different.  I've even found a few moments here and there to regain my Zen.  What a year we have had. What a year a 'difference' makes. 

Happy Wy and His Rattle
My Happy, Healthy Baby Boy<
Wyatt, 10 months old.
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