Tuesday, February 25, 2014

Birds of a Feather….

Some things you just need to go to Costco for.  Well, not "need" but you know what I mean.  I was nearing the end of my first pregnancy, and hadn't been to Costco in years, if I had ever been.  My Dad would come home with magnificent finds, but wisely avoided taking me or anyone else with him. I can't blame him; after shopping for such a large family for years   
(he always did the grocery shopping for our group of 12+) he had his own way to do things and wasn't going to change it for anyone.  The lure of Costco was too strong and it was time for someone other than my Dad to have the privilege of shopping at the consumer mecca.  My Mom and I were going!  She drives a school bus for a living and has no personal vehicle (my Dad is always busy with their shared vehicle) so we borrowed my brother-in-law's car.  We were excited to take a little day trip to the next city over and load up on stuff from the mega store.

We spent too long inside, as can happen.  Aisles upon aisles of things to look at, remark on the good price, and not buy.  Samples at the end of aisles to keep your strength up while you walk the equivalent of 40 city blocks to travel from one side of the building to the other.  What begins as excitement ends in utter despair and desperation to leave.  
"Oooh, look at that tv - it's bigger than my car!" is replied to with 
"Wow, you're right -  I can't believe it's only four months' wages!"  Aisles later, 
"Oh my goodness, there are 800 granola bars in this box"  is met with 
"Oh please don't buy 800 granola bars - they'll never get eaten!"  The last aisles of the store are faced with hatred.  Pure and unfettered hatred.   
"Sharon, do you think this meat would freeze well?  We could really……" 
  "I am going to take that meat and throw it out of the car window on the drive home if I have to stand and talk about it with you." 

Truthfully, I'm never actually that mean.  Well - maybe I am, but I say my mean things with a nice tone with a smile on my face.  I also bounce back quickly.  Well, I think I do.  

This is my Mom.  She presents "normal",
but will wear things like this lampshade on
her head (supposed to be a hat?) that can
cause you to question.
We emerged back into the real world exhausted, a few hundred dollars poorer, and ready to go home.  We started loading up the car.  I noticed a dog bed in the back that I hadn't noticed before.  I moved it out of the way and laughed at how such big things can go unnoticed.  We sat down, and as my Mom went over her receipt I scoured the car for gum.  I found a pack in my visor and found a stack of photos too.  I popped a piece of spearmint from the foil pack and leafed through each photo, showing my Mom a few of a dog who looked a lot like my sister's dog that had passed away several years earlier.  Before putting the pictures and gum back in the visor I spent a good amount of time checking my teeth in the mirror.  Remarkably, only then was my Mom ready to start the car and head home.  

Key in ignition.  The car won't start.  Won't even turn over.  Actually, the key will barely move.  It's as if it's jammed.  My Mom starts messing with the gears - hoping that something is out of place and fiddling with the shift stick will be the trick that gets the car to start.  She tries absolutely everything.  Every trick people who don't know anything about cars try.  Pumping the brake a few times.  Taking the key out and putting it back in.  Gentle at first.  Rough the following time.  Moving the wheel.  Trying to turn on the radio.  Moving the seat forward.  Backward.  Forward again.

We were stranded.  I open my window, and complain that we will have to wait to be rescued while our ice cream melts in the back.  To make things worse, we will probably have to split the cost of whatever repair the car needs since it broke down while we were borrowing it.  

Sitting in despair,  we had only just lost our resolve when our rescuer came to the window.  We must have been noticeably in distress to be attended to while still sitting in the car!  My hopes were immediately lifted, I bent down and stretched my head toward the driver side window so I could smile at our hero.  She asked 
"Can I help you with something?"
"Yes!" My Mother exclaimed, "The key seems to be jammed and just won't turn in the ignition"  
"We've really tried everything" I chimed in, unsolicited.
Our hero looked at us, with an expression I could not place.  Not a smile, but not quite a grimace.  More like the face you make when you've eaten something gross - truly gross - but have to retain composure because of whatever situation or company you're in.  That's the look!  Strained composure.

"That might be because this is my car"  She said slowly, with a combination of contempt, confusion and deep deep pity. 

The look on her face now made sense.  We had the wrong little white car.  Totally wrong.  The car we borrowed wasn't 5 gear, it was automatic. The interior was grey, not blue.  My brother-in-law's car didn't have gum or pictures in the visor.  Didn't have a large dog bed in the back seat.  Oh my asinity - he didn't even own a dog, and none of the photos I leafed through had him, my sister or nephew in them!  

I am confident we were the only ones laughing as we removed our groceries from her car, smacking her gum between our teeth.  We laughed ourselves to tears as we loaded the right car with our purchases, noticing all the things that were obviously different.  Night and day different.  The only thing that was similar between these two cars was that they were small and white.  

Recalling this story always makes me laugh. Out loud laugh.  It's also a grim reminder that no matter how hard I try, or how vehemently I deny it - I possess many qualities (good or otherwise) that make me just like my Mother.  

Please feel free to laugh at our expense.
The first two photos are faces we have obviously deemed acceptable for human interaction.
The second two photos are images of what we perceive as acceptable public (or semi-public) behaviour.
  I am holding an entire serving bowl, meant for ALL guests at a party in order to scoop every last bit of bean salad from the dip container in the centre.  My mother is dancing, full throttle, in her pyjamas. 

Thursday, February 13, 2014

My name is Sharon, and my son has Cerebral Palsy.

I recently watched a Ted Talk featuring a comedienne who has cerebral palsy.  The talk is entitled Maysoon Zayid: I got 99 problems... palsy is just one.

Maysoon Zayid.
I do not own rights to this photograph
Maysoon is funny and well spoken.  Although the point of her talk was for the disabled to be fairly represented in the media - it was a different part that stuck.  When she spoke these words, it clung to my heart and I instantly felt like my innards were simultaneously drying into sponge and melting into biochemical waste.  Ever feel like that?   "Humans on the internet are scumbags…  suddenly my disability on the world wide web was fair game."  She mentioned that she was never made fun of as a child or an adult, and it has only been in the online world that people have ridiculed her.   "The doctors said that I wouldn't walk but I am here in front of you.  However if I grew up with social media, I don't think I would be.  I hope that together we can create more positive images of disability in the media and in every day life.  Perhaps if there were more positive images it would foster less hate on the internet." 

Why did this make my stomach turn?  Because I have more children in my home with disabilities than without.  

More WITH disabilities than without.  Out of my 6 children, four are living with  disabilites.  Some are more visible and noticeable than others, but all are very real and affect every facet of their lives. What have I done to help make the world more accepting and kind for them?  


I love them fiercely.  I do all the "Mom" things I'm supposed to do, and then some.  I've been so busy loving them I didn't realize I needed to shoo the wolves waiting at our front door.    

Maysoon's talk turned a light on for me.  We (parents) used to only have the ability to prepare our young for the world - but now, with social media and the world wide inter web, we can also help prepare the world.  Even if it falls on deaf ears, we can try.  I have a responsibility to make this world a little more kind for my children who will ultimately leave my home and make their own way.  

I will try to impart to you how amazing they are, and hopefully you can share that enthusiasm with your family and friends.  Slowly, we can change attitudes toward disabilities and the online world will begin to reflect that shift.  

Because Maysoon has it, I'm going to start with Cerbral Palsy.  

Cerebral Palsy is a disorder caused by an "insult" to the brain.  It literally breaks down as cerebral = "of the brain" and palsy = "lack of muscle control".  CP can look very different from person to person.  Some people can walk, while others can't.  Some have normal or higher than normal IQ and some have intellectual delays.  It can affect one side of the body or both sides.  People with cerebral palsy (a neurological disorder) are often found to have other neurological problems such as seizures, vision/hearing problems, abnormal pain/touch perceptions, etc.  

My 8 year old son has cerebral palsy. 

Anyone who knows him, knows that he is truly a special human being.  Living with his disability has made him incredibly sensitive, perceptive and kind.  I'd also like to point out that he is so COOL.  I was a total dweeb when I was young.  Yes, I still am - that's ok.   Not him.  As I like to say (in a terrible British accent) "He's got the cool."

 RJ Mitte
I do not own rights to this photograph
When I started watching Breaking Bad, I was ENTHRALLED to see a young man on television with cerebral palsy.  RJ Mitte is handsome, talented and the perfect example of someone living with mild cerebral palsy. 

The internet is a great power.  It really is.  Imagine explaining the internet to any previous generation.  They would call it witchcraft!  You can instantly talk to people around the world, you have access to any and all information, you can even send money with it.  Witchcraft I tells ya!   

The point is, the internet is a great power that can be used to do extensive damage.  It can also be a light in the dark.  A place where people living with or affected by disabilities can support and love each other.  If you live with someone with a disability, or you ARE someone living with a disability - be a light in the darkness.  Make the internet a place for people with disabilities to find comfort and strength.  Make it a place where people can learn about labels and find out what is behind them.

"Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that." -Martin Luther King Jr.
With all of that being said…. let me share.    

When I first delivered my son, they laid his 10lb 2oz body on my chest.  I started proclaiming that the Guinness Book of World Records needed to be called, because I just delivered the biggest baby EVER!  (He was my smallest by the way). 

I felt that newborn on my skin, breathed him in and discovered a place of wonder I didn't know existed.  My midwife noticed he wasn't breathing.  Within seconds my birth room was flooded with an absolute mob of medical staff.  I can't remember where my husband was.  My Dad started watching the clock.  My mother's face went blank.  My baby was blue.  The midwife began distracting me by explaining every detail of the placenta.  

The high from naturally delivering a child, mixed with the energies of countless people fighting to save his life left me not understanding anything that was going on.  I felt high.  I heard voices.  Beeps.  There was a small window between two people where I could see my son, lifelessly being suctioned.  

The hushed, stern voices were suddenly loud.  "He's breathing" echoed in the room and he was wheeled out.  He swallowed meconium during the birth process and it obstructed his airway.  We spent 11 days in the NICU and after many tests were sent home.  

I clung to that child.  He was never away from me.  In a sling to do the dishes.  Bathing with me in a lukewarm tub. In a sling for walks.  Nursing for hours.  It didn't matter, he was alive and I would appreciate absolutely every moment with him.  He might be the only baby my husband never got to spend any time with, I just wouldn't let him go. 

My delightful, remarkable, wonderful son
When it was first suggested my son might have cerebral palsy, I refused to accept it as a possibility.  My perfect child - who was smart, funny and the absolute light of my life couldn't be handicapped.  

I know.  That was my own pride.  My own guilt.  If he had CP, I was somehow responsible.   

I refused to acknowledge it could be cerebral palsy; however,  I could see he had difficulties and that he needed help.  He began therapy to help with his fine motor skills, gross motor skills and speech.  The therapies began and the reports pointed to the obvious.  I read the first round of assessments and cried.  3%, 11%, 5%…. something was wrong, he was not just quirky.  

He had an MRI scan to confirm the suspected diagnosis, and everything was solidified a year or two after therapy began.  

My son had cerebral palsy.  

He was STILL perfect. He was still smart, funny and the light of my life.  

He has friends.  He plays games.  He reads.  He bothers (tortures) his brothers and sisters.  He goes to karate.  He even inspired another set of parents to enrol their son with cerebral palsy in karate. 

He is more than the son I thought I gave birth to.  

He is so much more BECAUSE of his disability.  If he can't physically accomplish something, he keeps trying until he finds a way.  If he can't make a modification, he just keeps trying.  His first year at summer camp, he couldn't stay on his horse for more than 30 seconds without excruciating pain.  He kept getting back on.*  This past summer was his fourth year at camp and he was riding his horse with the other children for the whole lesson without a difference between him and the other children.  They even had to give him trouble for making the horse go too fast!

Your son or daughter with Cerebral Palsy IS the talented, smart, loveable child you wished for.  

I won't say that your friend, neighbour or family member with cerebral palsy is the same as you.  The same as "the rest of us".  He isn't.  She isn't.  If you're our neighbour, you live next to a little boy who struggles to swallow, hold pencils, put gloves on, can't do buttons or zippers, who wakes up in agony because his legs are cramped, who can't move his tongue in a circle like you can (and speaks with an impediment because of it), who can't stop his arms and hands from twitching, and who can't straighten his fingers even when his karate teacher is really hounding him to (hello - karate chop!).  He is nowhere near the same as you.  He is a little boy who sees people with bigger disabilities and doesn't stare or gawk.  He talks to them like a person - not like a pet, or an invalid.  He sees people beyond their abilities or disabilities.  

People living with cerebral palsy struggle to do the things we take for granted, every day.  They need friendship, support and respect.  The last thing they need is criticism or bullying.    Talk about disabilities with your children, your co workers, your family.  It's not a dirty secret that we aren't allowed to discuss - get it out there and make it accepted!

Disabilites aren't something to hide, they are something to explore and understand.  We are ALL different - it's just that some of us get labels and some of us don't.  

*He kept getting back on because he had the support he needed.  The camp director gave him the horse with the least amount of girth.  Staff discretely helped him up and down without the other children knowing he was struggling.  He was praised for each improvement he made and encouraged to continue trying.  If he was allowed to skip horseback riding because of his disability he still wouldn't be able to ride to this day.  He took strength from the encouragement he received and combined it with his desire to be like the other kids and accomplished something I truly didn't think he could.  Good thing I didn't let on!  My attitude is just as important as his.  So is yours.  If you know someone with Cerebral Palsy and aren't sure how to interact with them, encourage them, discipline them, please visit the Ontario Federation for Cerebral Palsy.  http://www.ofcp.ca/index.php

Just say Yes

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