Saturday, October 13, 2012


Way back, many years ago, when I was young and carefree, I got bored in my clerical assistant job for the Inland Revenue in the UK (that's their version of the scary IRS).  So - I quit said job, and signed on to be a full time, live-in volunteer at a residential school for children with cerebral palsy. 
Why ?
 I don't know. I had never had anything to do with kids with special needs of any kind. I was 22 years old, and needed a change - and when I contacted the volunteer agency, this was what they suggested. So, I moved into the hostel on the grounds of the school, and entered an unknown world.  

I worked with teenagers with cerebral palsy and additional problems.  
This was back in 1985 - literally a lifetime ago for some readers - and I still miss the place, the kids, the work.  I remember oh so well the children - several of them had bodies twisted so badly from, I assume, scoliosis.  
I have pictures of them, I really must scan them and bring them into the digital age.

I remember one boy - Mark - he was about 15 years old, and had just the sweetest smile ever.  His body was a mess - his arms and legs practically useless because of the way his spine had twisted.  He had to use a moulded seat in his wheelchair in order to be comfortable. He couldn't lie on his back or front, and had to be propped with pillows. Feeding him was so very hard - it took at least an hour of feeding him mushy food from a teaspoon.  He couldn't drink out of any kind of cup - the only way to get liquids into him was via the teaspoon.  He would have been a prime candidate for a feeding tube, but back then I don't even know if they even existed - I certainly didn't know anyone with one.  Mark was always so concerned about the person feeding him - he knew we were busy, and would often tell us he was done, even though he wasn't - I think he felt that he was wasting our time :(  

Mark couldn't talk - but looked up for "yes", and side to side for "no". He did have a communication board on the tray of his wheelchair, but unless you knew him well it was hard to figure it all out.  I don't remember him ever getting frustrated with anyone because they couldn't understand him - he was oh so patient with us all !

Mark loved to listen to Pink Floyd's album - "The Wall" - and to this day, I can't hear certain songs without thinking of him.  

Mark passed away in his late teens.

As well as Mark, there were a bunch of other children - some as physically involved as him, some less so.  They all had cerebral palsy to varying degrees - most totally dependent, using wheelchairs, though a handful could walk using walkers.  
I think back to all of those children - and all we did for and with them - dressing them, feeding them, teaching self help skills, independence, academics, physical, occupational, speech therapy. 
Yes, these children lived away from their families - but they were in a home/school where their every need was taken care of.  They went home for school breaks, some went home on weekends. 
They were taught. They were fed -even if took an hour or two per meal. They were bathed, taken to the bathroom, had diapers changed as necessary.  They spent their days learning, playing, socializing. They even had a horse riding facility on the grounds.  They had a sensory room, gardens to walk in, toys to play with, adaptive tricycles to ride. We went on field trips, out into the community. We took them on vacation to the seaside. They were loved.

Like I said - they were the first - the ones that taught me what my life was going to be about.  For that, I thank them.  
I wrote this poem all those years ago.
I may not be the best poet in the world, but it was written 
from my 22 year old heart.

I've only known you for a while
But in my heart you've grown
And very time I see you smile
I think of those I've known

The ones who complain forever
About their lot in life
They moan about the weather
Their husbands and their wives

They're never ever happy
There's always something wrong
From when they're babes in nappies
Until they are long gone

They never stop to think
Of people such as you
Living on the brink
Of understanding as we do

So, you are not "clever"
Or as "pretty" as can be
And you will never
Be able to be free

Sitting in a wheelchair
Always needing someones aid
Do you feel this is fair ?
Do you ever feel afraid ?

Or are you quite content
With the life you have
Your body is twisted and bent -
Yet still you laugh !

Perhaps you can't understand
All that I have said
But by your side I'll stand
And through life we'll tread

With love my heart is filled
For you, my special friends
And I'll remember you still
When our time together ends.

I have read many accounts of the conditions that children such as Mark live in in orphanages and institutions in Eastern Europe.  
I try to imagine how his life would have been if he'd been born in a different place. How long would he have survived ?  Certainly not long, for he would have starved to death at a very young age.  
I picture all the other children I worked with back then - and the hundreds I have known since. 
How many of them would still be with us ?
How many would have spent their short lives in a crib, starving and lying in their own waste ?  
How many more will have to suffer that fate ??

That's why I keep shouting. 
For all the Marks that have been or will be.

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