Downright Joy

Discovering joy in unexpected places – a journey into Down's syndrome, Dyspraxia & Autism


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Tango

I read a remarkable story recently that a friend shared with me, about a group of dancers in Buenos Aires who were learning to dance the tango. Nothing unusual there; the tango being synonymous with Argentina of course. These dancers, however, took far longer than most to learn such an exotic and complicated dance; up to ten years as opposed to a more usual single year. These dancers had Down’s syndrome.  A remarkable story of determination, patience and perseverance that led some of those dancers (or artists as their instructor rightly prefers to call them) performing to audiences across Argentina and literally moving them to tears.

Yet it was not their achievements that stood out for me, remarkable though they were. No. It seems there was another reason why it took so much longer for the group to learn the intricacies of the dance compared to most. A reason that had nothing to do with any physical limitation or impairment.

Simply, whenever the music stopped the dancers would seize the opportunity to move around each other, chatting, hugging and generally socialising with one another. So much so their instructors had quite a job refocusing them on the task in hand!

And that got me thinking.

How wonderful. How utterly refreshing and uplifting.

A group of people who love to communicate. With each other.

Learning the dance was important, very much so. But the friendships, the connections that were there to be made more so I imagine.

It is said that people with Down’s syndrome have difficulty communicating. Their speech maybe impaired or delayed or even non-existent perhaps.

Parents, educators, medical professionals all agree that Speech and Language provision is vital for a person with Down’s syndrome. And of course, it is. I don’t deny that for a moment.

And yet.

The more people I meet with Down’s syndrome, the more I am convinced that they are better communicators than the rest of us put together. They are not often constrained by convention or etiquette or old fashioned British stiff upper lip. They rarely look at the clock and feel pressured by time. They are free to be themselves. So they are.

I just don’t have the time is a phrase you will rarely hear from a person with Down’s syndrome. Yet it’s a phrase that many of us can be heard saying on a daily basis.

I need some ‘me time’ is another; in a world where we fight to carve out time for relaxation. So many of us under stress to breaking point.

Is it ‘me time’ that we really need? Is it more time even? Or is it that we no longer make time for one another.

Perhaps we would do well to look at the lives of the very people society has so often shunned; people with Down’s syndrome. To look at people deemed to have communication difficulties and learn from them. Allow them to teach us, not the other way round. Allow them to show us how to come together in the midst of what we strive for and listen to each other, talk with each other, make time for each other.  Show us how to truly communicate with each other through whatever means we have.

However long it takes.


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Abracadabra

 

Magic photo (2)

Abracadabra

This afternoon, my 9 year old daughter rediscovered her Magic Set, a gift for her birthday some years ago. A happy hour or so followed this discovery as she relearned and performed some old tricks. Tricks made trickier by her dyspraxic brain, we none the less cheered and applauded her with “wow” and “amazing” and “how did you do that?” Ignoring a dropped card here and there or the not so slight of hand that kept revealing its secrets, we allowed ourselves to be thoroughly entertained by her enthusiasm and joy.

Magic.

We smiled as we recalled her much younger self with the same magic wand. Sent to her room for some misdemeanour or other, she slammed the door, waving her wand as she did so, shouting those magic words “abracadabra, make everything MY WAY!” Her foot stamping in time with the last two words.

In a year when she has discovered that Santa isn’t real and the tooth fairy is not to be trusted, you’d be forgiven for thinking that our house is now devoid of magic.

In the words of CS Lewis, there is a magic deeper still…..

It has nothing to do with fairies or elves, magicians or illusionists.

Before I was a mum I would imagine magical moments like this: happy parents swinging their toddler on the count of three as they walked along a path to a park. A familiar scene, but one that, in reality, never happened. Neither of our children could walk when they were toddlers. The shout it from the roof tops moment when my first born took her first steps as a 3 year old was soon eclipsed by another. The deeply personal moment she stood up at home, later that day, and whispered proudly to herself “I can walk”.

Magic. Deep Magic.

The magic happens when we least expect it. Like it did yesterday.

Yesterday, Hazel walked hand in hand with us, her parents, very slowly along a path for the first time in her life.

Nothing remarkable or magical to the untrained eye. To the non believer, there is nothing to see.

Hazel is my almost 7 year old daughter who has Down’s syndrome and cannot walk by herself. Hazel is wheelchair dependent.

Deeper magic.

And, just a few days earlier, this same magic had appeared at bath-time. Her favourite toy that blows bubbles and plays a tune had stopped working. The bubbles had run out. A regular occurrence. Usually Hazel would simply turn away and look for something else to play with. Not this time.

Magic was in the air.

She turned and looked up at me. Directly. Urgently.

Mum you need to fix this for me she said.

Except she didn’t say a word. She can’t. She does not yet have the words to tell me when something is wrong or when she wants something.

But she looked at me. For the first time in 7 years she told me what she wanted by looking at me.

Magic. Deeper magic.

I’ve been taking a break from blogging and some social media recently. Not because I don’t like it, the opposite is true. But having my head in a screen as often as I was meant I was in danger of missing the magic. I want to be fully present in these moments. They are a long time in coming and all the more magical because of that.

When a child reaches a milestone it’s always a magical moment.

When a child or person with a disability reaches a milestone, or does something they have never done before it is beyond magic.

Deeper magic.

 

“There is a magic deeper still that the witch did not know”

CS Lewis, The Lion, The Witch And The Wardrobe.

 


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Turned out nice again

If there’s one topic of conversation that we Brits do well it’s the weather. I wonder what on earth we would talk about if our weather was always the same. Without this subject, I fear we may never talk to our neighbours or people we meet ever again!

Picture the scene, a busy Post Office, in a suburban town in the U.K.

A queue. Oh we do those well too, queues. Usually in silence and often impatiently. Avoiding eye contact and hoping that no one invades our personal space. Unspoken rules of being British, and, if you are a visitor to these shores or have made your home here then you will have possibly been on the receiving end of one of our glares or tuts of disapproval if you dared to get any of this wrong. Please accept our apologies if this has happened to you. We don’t mean to be so rude. At least I don’t think so.

But you are not alone. My daughter, who has Down’s syndrome, hasn’t learnt those rules either. And I hope in some ways she never does. As we took our place in the queue, me standing and Hazel in her wheelchair with shiny bright pink wheels, waiting our turn, she pretty much broke every one of them.

Firstly, she cheered as we went in, hands waving frantically. Everyone turned and stared at us.

Ssssshhhhh, they said, not actually saying a word.

Secondly, she laughed. Loudly.

Giggled.

At what, I have no idea. Maybe the fact that there were lots of people all standing there saying nothing at all was very funny.  It is, if you stop and think about it.

The Post Master definitely smiled, I caught his eye from my place in the queue.

Cashier number 2 please.

Two more still in front.

A commotion behind us. The whirr of an electric wheelchair. Not pink and pretty, but cumbersome and clunky.

The silent, staring, glaring faces turned again. Then turned quickly back for fear of making eye contact with its occupant. Letter in one contorted hand, control stick in the other.

Fear.

More silence, if there is such a thing as more silence when you already have silence. Relief that they were ahead and not behind was tangible.

I moved her pink wheels to make room in the cramped waiting area for his black ones. As I did, she broke another rule. Or was it a barrier? She reached out her hand and placed it firmly on his knee. And, in a second, the rule was broken, the barrier lifted.

“Hello”, he said

“How are you?” He said, his voice as shaky as his hands.

She didn’t answer. She can’t. Yet.

But she spoke louder and more clearly than all the articulate people in the Post Office put together.

The Post Master smiled. So did the other customers. One stepped forward to help our new friend put his letter on the counter. Another turned and spoke to Hazel, admiring her pink wheels.

Silence broken. Lines of communication opened.

As we left the Post Office, our electric powered friend was already half way up the road. There was no stopping him. Though I’m sure there are plenty more barriers he will have to face in his life. As do we, but, at least for now, in her five year old world, Hazel has no idea those barriers even exist.

Turned out nice again.