Downright Joy

Discovering joy in unexpected places – a journey into parenthood and Down's Syndrome

This Enabled Life

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Pony

If you’d told thirty something me that, in ten years’ time, I would be immersed in the language and experience of the disabled (from a carer’s perspective), I would have been horrified. Certainly fearful. The language surrounding disability so often negative, conjured up outdated and prejudiced ideas in my mind as to what it really meant to be disabled. ‘Stick man’ in wheelchair symbols segregating an entire group of people, robbing them, to some extent, of their individuality.

The disabled. It was a word I was distant from.

Ten years on and, for me, the word has changed from something to fear into someone to love.

Two someones actually.

Both my children find themselves labelled, to a degree, with this word. Down’s syndrome and, more recently, Dyspraxia have propelled them and me into a world of disability.

One corner of this world is Riding for the Disabled. An iconic name. RDA. Falls easily off the tongue. And though I wouldn’t want to change the name, in some ways, it’s a misnomer. Let me tell you why. Hint…it’s magic!

You see, the moment a person steps inside an RDA arena, or is wheeled inside, they actually cease to be disabled. Yes really, they do. Honestly. I’ve seen it with my own eyes.

Time and again their disability, whether it’s an obvious one or a hidden one, appears to disappear! Like magic. At least, that’s what’s happened to both my children whenever they’ve gone there.

Feet that could not walk given an opportunity to run on borrowed legs, four not two. Instead of staring up from the confines of a wheelchair, eye contact tricky when level only with an elbow; they now look down from a great height and are masters of all they survey.

Arms and hands that struggle with the simplest of everyday tasks take hold of the reins and quickly learn to control the gentlest of giants.

Voices that are mostly silent now dare to be heard. A whisper or a shout, for the first time perhaps. Sensing their non-verbal rider has an untold story to tell, the pony lends a listening ear, without comment or expectation, without judgement or prejudice.

Self-esteem, buried deep by exclusion or failure, emerges into warm sunshine. Bursting out in a smile that wasn’t there before. High fives and fist pumps were made for moments like these.

No longer disabled but enabled.

Enabled to do something physical, something challenging, something motivating, something rewarding. For some, it’s life changing.

Riding for the Enabled.

I know it’s never going to be a strapline, nor does it need to be. The real magic has nothing to do with the name, or even the ponies, precious and vital as they are. It’s the people. The volunteers. The enablers. Those individuals who sacrifice time and money to enable others. They are the ones who make the magic happen. Without them, each and every one of them, the disabled, would stay as they are. RDA – in our case Cotswold RDA, has a fantastic team of enablers. They deserve to be recognised far and wide for their selfless work. Work that changes lives, quite literally.

In the last 10 years I have come to know lots of enablers. People who go out of their way to enable our children, our family. Some are professionals. A Paediatrician who has given us unequivocal support. An Occupational Therapist who has pulled out all the stops to bring about positive change. A SENDCO who consistently validates our concerns and works with us to help our child. Teachers & TAs who go the extra mile to create the very best learning experiences for both our children. Nurses who have given us respite and support. GPs and their staff who make difficult times easier to bear. Charities and therapeutic services, speech & language therapists, physiotherapists, music therapists. People who work hard to enable others. This list is endless.

This is not to sugar coat living with disability. There are many tough times. Next to my laptop is a letter I received this week from our Paediatrician, summarising 18 months of assessments, hospital visits and other appointments. It’s a letter that those who have been on the road to a diagnosis will be familiar with. One that lists, in its heading, far more issues for our eldest child than we had perhaps realised. But the sharp in-take of breath that is needed on first reading a letter like this has been quickly replaced with relief and, most importantly, hope. Why? Because of the enablers we will now meet as a result. People who will help our daughter to succeed not fail.

Sometimes we look for them and can’t find them, this is true. Sometimes they are there but we are prevented from meeting them due to tightly held budgets or politics and red tape. Sometimes the fight to meet them is extremely frustrating, overwhelming.

But they are there.

And so we go into this post-diagnosis stage of our lives looking forward to meeting more enablers.

People who make a disabled life an enabled one.

M & H at RDA

Find out more about the amazing work done by Cotswold RDA

 

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Author: alisonjane2014

Married. Mum of 2 girls, one of whom has Down's Syndrome. Follower of Jesus. Finding joy in unexpected places.

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