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.

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