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.
April 14, 2022 at 6:58 am
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