Downright Joy

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


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Emeralds and Rubies

Photo by Sarah K Graves @ Pixabay

It’s a thing of beauty, my daughter’s favourite toy. It stands apart from the usual plastic playthings a child of her age may be drawn to. There’s a quality in the workmanship that can only be admired.

Bejewelled with rubies, sapphires, amber, amethysts and emerald ‘stones’, it spins on its wooden base with the lightest of touches. A little encouragement is all that’s required to make it dance.

Place it in the path of sunlight and it positively sings with joy.

And yet it’s fragile. Prone to tumbling off the table and clattering loudly, ungainly, disappointingly to the floor. Brushed off, knocked down, discarded.

And unless I am there to pick it up and put it back on the table, that’s where it stays. You see, my ten year old, non verbal, autistic daughter who has Down’s syndrome has never learnt that when something or someone disappears from her view, it or they are actually still there or somewhere else. Existing or existed, but now hidden. She has not learnt that her favourite toy can be experienced or even enjoyed again if only she would look for it. So she turns her back and walks away. She forgets the joy the toy brought and moves on to her next experience. 

Out of sight, out of mind. 

Until last week.

Last week was different. What changed, and why, I have no idea. Others more widely educated in these learning processes can explain. All I know is the toy dropped as it often does but this time she went looking for it. She bent down, she picked it up and it was she who put it on the table then continued to play with that which brought her joy. Her delight carried on as before, but her world had, in that moment, opened up and my delight was off the scale.

A first. An action I had given up on ever being possible. 

This time, there was no turning away and moving on to another experience. This was the one she wanted and she took hold of it with both hands. She noticed it had gone and that now mattered enough to go looking. My assumptions about her were wrong. 

Rubies, emeralds, amber and sapphire danced again in the columns of warm spring sunlight that streamed across the table. 

An ordinary table in an ordinary kitchen on an extraordinary day.

A pleasure that was hers for the taking and she was finally able to seize it.

Some ten years ago, after many weeks, she came to be discharged from the neo natal unit that had been her home and our place of safety.  A kindly consultant handled our departure and, sensing my unease at having to leave what we knew, told me of how much the world had changed even in a relatively short space of time. Just twenty-five years earlier her cousin had been born with Down’s syndrome and was routinely put into an institution. 

Out of sight, out of mind. 

The sadness in her eyes stayed with me. The if only was palpable. 

She knew there were so many colours waiting for this baby. My baby.

Ruby reds, ambers, sapphire blues, emerald greens.

I noticed she spoke only of her cousin in the past tense.

I hope someone walked with him and pointed out colours.

Like in a rainbow; though I imagine he noticed them first.

Last week the colours got a little sharper in our Down’s syndrome world. And now my daughter knows she can at least hold them in her own hands. 

I see others similar to Hazel, they are picking up brushes and painting rainbows like I’ve never seen before. New colours coming to the fore in a shifting landscape. Emerging artists taking up residence in a world that still struggles to embrace their art form. Their Down’s syndrome. 

We should not take their palettes away thinking they cannot paint. Neither should we begrudge what they find or what they are given. I have found they will share their lives, their experiences, their possessions willingly and extravagantly. They are not the ones needing lessons in humanity. From my little window on the world of Down’s syndrome Ive noticed they are often the first to show empathy to anyone who is treated differently.

When another cries in the room, my daughter cries too. Every time. 

Instead I want to stand back and watch them pick up the colours that matter to them. However they pick them up, whatever their understanding or ability is.  What will their world look like to them? How will they depict it, shape it, colour it? Who or what will they paint into it? 

I no longer want to assume I know what’s best for my daughter or for others with Down’s syndrome, or anyone else for that matter. I do not speak for them. They are not voiceless and never have been, it’s just our world paid no attention to their voice or afforded their particular art any worth. The loss of colour to humanity must be, I have often thought, incalculable. No. Instead, I want to learn from them, from the experts, the artists. I’m convinced we can all move forward into new and more vibrant life experiences when we do.

Of course I’ll have my own opinions, and in future I’ll try harder to keep these to myself if I cannot be sure they will do someone, somewhere some good. But I do want to see a people group who, though in the past were routinely placed in institutions and are still discriminated against simply because they have Down’s syndrome, are now brought front and centre where their colours can be seen as they were always meant to be. Not because they are better than anyone else, but because they’ve spent more time than anyone else under the table.

Out of sight out of mind

Some say diamonds are a girl’s best friend. I say it’s emeralds and rubies, and they can be friends to anyone.


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Seasons

What’s that phrase…. the one when a writer gets stuck for words? You know, when they can’t put pen to paper or find the words that, at other times, flow so readily….that. No, I can’t remember either.

Whatever the expression is I’ve got it. Had it. Still have it. I haven’t been able to put my thoughts down in print for a while now. Apart from one short article for the Down Syndrome Research Foundation, I’ve drawn a blank. Is that the word? No, no, but it’s something like that. Begins with a ‘b’, I think. 

I last properly blogged in July. By a lake. In a spacious and peaceful place.

A pause

A pause in a year that has drained me of words. And of so much more. 

Oh, this isn’t a lament about how hard life has been in a pandemic. Truth is, I don’t have the words for that particular story. And, even if I did, I know there are so many others who could tell their own difficult story; families like mine, who’ve had their vital support networks pulled, whose tired faces and weary, worn out expressions say it all; dreading the prospect of schools ever being closed again should the need arise. Teachers who (for me) have been the unsung heroes of 2020, continually being asked to go above & beyond what is expected of the rest of us and yet often criticised from all sides. I haven’t even mentioned all the other frontline key workers. People who haven’t spent months at home baking cakes, crafting, doing DIY or bingeing on box sets. And I’m not having a pop at anyone who did those things, but, you know, honestly? Jealousy is something I’ve battled with this year!

No. They don’t need to read my story and neither does anyone else. I’ll keep my thoughts about the last eight months to myself, at least for the time being.

For now, I remain lost for words. Unable to adequately communicate my deepest or even shallowest of thoughts.

Like Hazel.

Hazel is my daughter. Hazel has Down’s syndrome. Hazel is the clearest communicator I know but her language is an unspoken one.

So, like Hazel, I think I’ll laugh out loud at whatever I find amusing, whenever I find it. 

Like Hazel, I think I’ll stare intently at shiny things, bright things, beautiful spinning shimmery things.

I’ll stare at pictures I like, photographs I’ve taken, faces I see. I’ll smile at those. Like Hazel. She smiles at people. Often. Even if they don’t smile back (but they usually do). 

Like Hazel, I think I’ll run my hands over surfaces or textures that I like; the pebbles we collected in a brightly coloured bucket on a Devon beach, one July day. Seaside stones that now form a kind of miniature sculpture on my patio. A shadow of their former glory as the surroundings have changed; but I still like them. They make me smile. They cause me to remember a very happy day spent by the sea after many not quite so happy days in lockdown.

Hazel smiles often. I think she remembers often too. More than most people, perhaps. I’m convinced she regularly deposits joy for herself in her memory bank and withdraws it on a daily basis.

Like Hazel, I will explore my surroundings. I shall reach out and feel silver sage leaves between my fingers or inhale the scent of fresh mint picked from my little herb garden. I say garden, it’s no more than a pot really, but as it exists in my garden that alone brings me joy.

Still, no words needed.

Hazel is nearby. She has a stick in her hand and fallen leaf litter at her feet. She will always choose the opposite textures to me. Sand over stones. Sticks over sage. And leaves. Leaves are her favourite. Especially if they are falling around her. I know she loves them. Once upon a time she would say so.

Leeeeeaaves

As I hold them above her head and let them fall.

Her face lights up, arms stiffen and hands wave.

Leeeeeaaaves

Now, there are no words. She has lost them. Autism, or something, has stolen them. A gradual lockdown, of sorts, in a part of her brain. Not of her making or choosing. It came without warning. No one can tell me if or when the restrictions will be lifted. It’s hard to find the words to describe how I feel about this too. There are some losses, some experiences, that cannot be put into words because words are not always what a grieving soul needs to hear. 

Hazel accepts what is with a peacefulness that passes all understanding.  She is truly a mystery. Marvellously so.

She still loves leaves and the leaves still fall as they’ve always done. Hazel is thrilled by that, just as she’s always been.

If Hazel feels any sense of loss, she does not show it.

Somehow, the words are not needed.  At least not for now and not in these moments. For now, I will take a leaf out of her book. Literally. I’ll hold it the way she holds it. I’ll feel it, turning it over and over in my hand. I’ll marvel at it. I’ll shout with glee as the leaves fall around me. 

Messy and colourful; swirling noisily around me.

Like Hazel does. Like Hazel is.

She was born in the Autumn. It was messy back then too. Hard. The Great British Bake Off was on the television screen in the NICU restroom, in only its second season. Strange, the things you remember. And I remember there were lots of leaves. A carpet of them right outside the hospital entrance. Such a beautiful swirling mess.

Seasons

Like Hazel does, I will try to live in the moment. Not for it, but in it. Not worrying about tomorrow, for tomorrow has enough worries of its own. 

I will not try to find the words to explain to anyone how life is or has been of late. There aren’t any. 

There are just seasons

Waste your time, but do it joyfully. You are here once. Wasting time is a sacred activity.Gilo