Downright Joy

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


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Close Up

raindrops

Sunday evenings, at least here in the U.K., may be sometimes spent watching the most extraordinary wildlife documentaries on television. Against backdrops of breathtaking scenery, coupled with state of the art photography and filming, you can be taken on amazing journeys, encountering incredible creatures and habitats. Microscopic technology takes the viewer from the comfort of their armchair on a voyage of infinite discovery. Ordinary grains of sand, for instance, taken from the beach and magnified to reveal a dazzling Aladdin’s cave effect. Stunning jewel like precision and design. Each one different, unique, whether you believe them to be created or evolved. Redefining the meaning of a close up. Jaw dropping photography.

The hardest of hearts can be moved to tears at the sight of once magnificent sea creatures now suffering a terrible injustice. Suffering because of the shameful amount of plastic we humans have disposed of in their environment.  Whole movements that seek to reverse this horror have been born out of witnessing such atrocities. We care, they say. Though we didn’t used to, we do now.

Such is the power of technology; it advances our understanding of the world around us and helps us set to rights the wrongs we have committed. Technological advances being used for the good of the environment and, ultimately, all its inhabitants.

Yet it troubles me greatly that this same technology that allows us to travel further than we’ve ever travelled before and see in micro detail that which was previously unknown is so very, very limited. A technology that sees everything yet at the same time sees nothing.

Screening tests that are more advanced than ever before can now detect the possibility of Down’s syndrome in the unborn earlier than ever. (And, worryingly, it’s not always pointed out that the results can be wrong). Technology is so advanced that it won’t be long before all kinds of other genetic conditions are identified in utero. Many believe this to be a good thing. Technological advances supposedly being used for the good of society. Yet the ‘good’ these particular screening tests do is questionable, more often than not at the expense of another and largely unchallenged from an ethical standpoint.

As I write this blog, my daughter, who has Down’s syndrome is clutching a leaf.

It has held her attention for some time now. She marvels at it. Holds it between her fingers and spins it. She does not speak words, yet her voice echoes the joy she experiences from examining the leaf in her tiny grasp.

I hear her.

I hear too her newly acquired footsteps around the house. A sound that still makes my heart sing. Each footstep fought for over the last eight years.  Footsteps that we wondered if we’d ever hear. Though it wouldn’t have mattered if we didn’t …not greatly anyway. We do not measure her life by whether she can walk or talk. We do not measure her life at all really. How could we? It’s impossible to measure the joy she brings us each day, even if we tried. She has redefined the meaning of close up as she enables us to see so much more of life than we ever realised was there.

Just like it’s impossible to detect much more than one extra chromosome at a screening test. A truly advanced technological breakthrough that apparently tells you so much yet actually takes you further away from the reality of what or who is really there, beneath the surface. Waiting to be discovered, waiting to be loved, waiting to be nurtured, waiting to be cared for. And yes, I still count it an absolute privilege to care for, marvel at and learn from another human being, however many challenges there may be, extra chromosome or not. Indeed, parents, advocates and of course people with Down’s syndrome themselves are increasingly fed up of being told to bow at the altar of personal choice when it comes to prenatal screening. As if a person with Down’s syndrome were just another option at the Fresher’s Fayre of parenting options. Discrimination has never been so cleverly disguised.

I wish that in every heart that is rightly moved by the plight of the cormorant trapped in plastic or the dolphins tangled in discarded nets, there would be found the same outrage towards the plight of people with Down’s syndrome. An Extinction rebellion – though of course Down’s syndrome itself can never be made extinct even though worldwide efforts to prevent live births are abhorrently successful.

A people group so targeted by technology before they are even born. Deemed unworthy of protection yet feared enough for detection.

A lens that can detect them yet does nothing to protect them.

A lens that sees everything and nothing.

It appears to me that the lens is facing the wrong way.

H & leaf

For more information about what it’s really like to bring up a child with Down’s syndrome go to Positive About Down’s Syndrome


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Funny that.

Laughing boy

Did you wake up laughing today?

My daughter did, just like she did yesterday and the day before that, and the day before that too.

Did someone tell her a joke? There’s no one else in her room. Did she remember something funny she saw the day before? Perhaps. Not sure.

Maybe she was thinking about the bus journey to school and how bumpy it feels as she rides, strapped into her wheelchair. Or maybe she was thinking about the funny songs the Music Man sang to her when he came to her class; especially that one about the pirates- that’s funny. Or maybe it was the sheep on the farm she visits, or the goat that jumped on the trampoline with her one day. Whoever heard of such a thing?! Maybe it’s the strange plaster casts on both her legs that she currently has to wear. They do look kind of funny I suppose.

It’s no good asking her, she cannot give an answer. Though she is nearly eight years old, she has no words you see. And right now, only laughter.

Sometimes she is sad. Sometimes she is grumpy. Sometimes she is in pain. Sometimes she is tired.

Just like you, just like me.

A range of emotions.

But because she is non verbal she has to express them differently.

Unlike you, unlike me.

But laughter, chuckling, giggling, rib tickling, snort inducing, full on raucous belly laughter is very often her first emotion of the day.  I’d love to know what makes her laugh.

Did you wake up laughing today? Or did your thoughts turn immediately to worries?

Fears of the future perhaps, or just concerns about the day ahead. So much to do, so much to accomplish. What ifs and what abouts firing off in all directions in your head before your feet have even hit the floor.

My daughter woke up laughing.

My daughter has Down’s syndrome. Many people think her life is not worth living. They think she would be better off not being born. They called her life a ‘risk’. They said she is abnormal. They spoke as if giving birth to her was some great tragedy.

Funny that.

 

 


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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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Truth be told…

Words people said when my first baby was born:

Congratulations!

She’s beautiful

She’s got your eyes

So cute

Adorable

Aaaahhhh

So happy for you

So many wonderful adventures ahead of you

Welcome to the world little one

So many words, so many cliches. So many ways to express joy. 

Sshhh! Not too loud, you’ll wake the baby!

Precisely what I needed to hear, truth be told.

Just what the doctor ordered.

 

Words people said when my second baby was born:

I’m so sorry

 

So few words. Eyes averted. Hushed conversations. So many ways to express sorrow. Shhh! Careful what you say, you might upset the mother. 

Just what the doctor ordered.

But his prescription is long since out of date.

No one said congratulations when I had a baby with Down’s syndrome. 

I blame no one; I carried my own prejudices, I reflected the mood around me, to an extent I permitted it.

Yet ‘Congratulations, she is beautiful’ was precisely what I needed to hear.

 

So to any mother who today cradles a new born baby in their arms, or sits anxiously next to their incubator in a NICU; a baby that has been born with an extra chromosome…..I pray someone will hold your hand, stare with wonder into the eyes of your precious child and tell you the truth of it:

Congratulations! Your baby is beautiful! Welcome to the world little one.

Today, on World Down Syndrome Day,  I will celebrate every single glorious life, born and unborn, with an extra chromosome.

Each one profoundly beautiful.

Truth be told.


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Kaleidoscope

Kaleidoscope

Some say that the old toys we used to play with as children were the best. I’m inclined to disagree; I much prefer, on the whole, the technology we have nowadays. iPads win over Etch a Sketch for me any day.

I recall a time when, as a child of the seventies, Science Sets were all the rage. Big shiny boxes with a photograph of a child wearing a white coat and spectacles on the front. Holding in their hands a bottle of some brightly coloured liquid and a pipette. Always a pipette. Test tubes, potions and conical flasks found their way into many a bedroom- turned laboratory.

But they were not for me.

I never had a Science Set. Perhaps I never asked for one, I’m not sure. It seems unlikely, given that the only toy I was interested in experimenting on was a Girls World; hairstyling and make up appealed more to me than staring into a microscope.

I did, however, own a kaleidoscope. One of those garishly coloured tubes with a twisty end and a lens to look through.

A toy which, on the face of it, could not compete with the Science Set. A toy which was easily disregarded and unlikely to make it onto most children’s Christmas lists. Undesirable. Though, if your childhood was anything like mine, then you probably got one anyway – it was the kind of toy your Granny would buy you.

Yet it was a toy that held a secret.

A toy that, when you held it up to the light, something beautiful happened – if you looked inside it. Brightly coloured shapes would form into patterns, shifting around as you twisted it. A new landscape with each turn. Different, each and every time. No pattern ever quite the same. Vibrant. Drawing you into its charm. As you closed one eye, whilst the other peered through the lens, all else around you became obscured.  A toy that took you into a new, mysterious and enchanting world.

Mesmerising.

A toy that did not have to be cleaned up or packed away in its box. A toy that, when most other toys had lost their appeal, kept on giving. All you had to do was take it in your hand, put it to your eye and look up. Look up at the light and take a closer look at the beauty that was within.

Along with me, those mini scientists grew up. Most abandoning their childhood experiments in favour of other career paths. But some continued. Their interests awakened at an early age and their skills honed in a state of the art, technological era of scientific discovery. They are the scientists of today. Brilliant minds pursuing new and exciting technologies.

Some of them have made new discoveries. Most recently in the field of pre-natal screening. They have found more advanced ways than ever before of telling a pregnant woman whether the baby she is carrying has Down’s syndrome – though they are not always as accurate as those who sell the tests  sometimes claim.

More advanced ways to view the unborn life using big grown up Down’s syndrome detecting Science sets.

If only they’d use a kaleidoscope; they would discover so much more.

Look up at the light, see the landscape.

Kaleidoscope 2

 


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Epiphany

I am a treasure seeker.

I love to be surrounded by beautiful things. Not necessarily expensive things – though I like them too. Just beautiful things. Recent treasures I’ve acquired are hanging in my redecorated living room; a picture of a woman gazing out of a window, a bird cage on the table behind her. Anything with a bird cage in it is beautiful to me, there’s something deeply enchanting about them. Then there’s my framed Frida Kahlo staring strikingly out from the chimney breast. These are my latest beautiful things.

My children love treasure seeking too. Over the years my eldest has kept an assortment of valued bits and pieces she has found or been given. A diverse and eclectic mix of fascinations. Conkers happily collected on the way home from school one day, actual fairy dust in a tiny bottle, confetti from a family wedding, bits of paper from friends with “bff” scrawled on them in childish form, usually under a hand drawn princess or something fluffy and adorable.

I remember the time, as a toddler, she literally held onto one particular treasure for days. Ignoring the vast array of toys she had successfully acquired my daughter chose, as her most favoured possession, an empty margarine tub. She carried the margarine tub with her wherever she went and at all times. Her limited language skills at that point meant I never found out why the tub found such favour in her eyes. Its worth was not apparent to me, to begin with, but her love for it was. The margarine tub became important to us all.

Her younger sister also finds treasures of her own. A discarded ribbon from an unwrapped gift will please her often more than the gift itself. A chiffon scarf that can be floated in the air will delight her if she discovers one lying around. And as for autumn leaves cascading down around her on a windy day; well that’s her idea of heaven. Heart singing moments for her and for those who care for her.

Treasure for the soul. Like balm.

Where your treasure is, there will your heart be also….a biblical truth which, whether you have a faith or not is hard to deny.

Most recently, my eldest acquired a new and precious treasure which she now keeps in a glass jar.  A fragment of Myrrh, another kind of balm, given to her as an Epiphany reminder by a man who has spent his life treasure hunting in the Middle East. Canon Andrew White, often referred to as the Vicar of Baghdad; a man who continually seeks out the good in those often vehemently opposed to each other, to bring reconciliation and facilitate peace where only conflict exists. A man who knows where real treasure is to be found. Found among people the world often dismisses, often fears, and often shuns.

My wealth has increased beyond measure since my daughter was born with an extra chromosome seven years ago. My Epiphany.

Hazel has Down’s syndrome. A condition, a group of people, so easily disregarded, yet who, before they are even born, are sought out more aggressively than ever through modern screening methods. Feared and shunned by a society that cannot see the treasure that is within.

Society…they are the ones whose pockets are empty. They have not found this treasure.

My pockets are full and so is my heart.

hazel with grass

#dontscreenusout


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The Gift

My Gift did not come wrapped in shiny paper, nor tied with a velvet bow.

My Gift was unexpected, it caught me completely off guard.

I struggled to see that this Gift was for me;

Gifts are not meant to be hard.

 

My Gift came with a label or two; one said “extra chromosome”,

The other read “handle with care”.

The second; I tore off and tied to my wrist.

The first, I hid, too afraid others would stare.

 

All around me other Gifts were being delivered,

Amongst fanfares, banners, balloons and flowers.

My Gift came amid hushed tones and frowns, with questions, fears and tears.

Concerns that had not crossed anyone’s mind at earlier baby showers.

 

How could I look after this Gift? There must be a mistake.

Surely this Gift was not intended for me; it was never in the plan.

And yet, in my Gift I saw a reflection of me so clearly staring back;

Azure blue almond shaped eyes, oh those beautiful almond shaped eyes!

 

My Gift. My Gift is, without question,

The best present I’ve ever been given.

Granted, it took me a while to appreciate; I wish I’d realised before.

My Gift has a beauty beyond understanding, my Gift is easy to adore.

 

My Gift keeps on giving and giving.

Occasionally it might be in sorrow; far more likely I find, it’s in joy!

My Gift is priceless, its worth cannot be measured.

If your Gift is labelled the same as mine, it’s a Gift you will learn to treasure.

Hazel Morley (Neonatal Intensive Care, Bristol) 300911 016

For more real life experiences from families of people with Down’s syndrome check out

www.positiveaboutdownsyndrome.co.uk

Find out more about Down’s syndrome from

Down’s Syndrome Research Foundation UK