Downright Joy

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


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Fractured

We’ve been here before, you and I.

The Waiting Room.

Different posters adorn the walls. Antenatal Word Clouds long since replaced by Musculoskeletal Murals.

And the patients. They are different too. No longer anxiously stroking an unknown bump, nervously avoiding eye contact with others in The Waiting Room as they await their scans. These patients rest their hands on crutches. Or support their sling encased arms with a gentle hand. Waiting for their turn, for their particular trauma to be addressed. To be healed.

They smile at you. They can’t help it. You make people smile. In your pink wheelchair, with your pink hair bows. If they feel pity for you, it soon turns to joy.

You do that to people; I’ve noticed.

Which is good, because right now my stomach is churning. My heart is racing. You see, we’ve been in The Waiting Room before, you and I. And I did not expect to be here again.

That Department has moved, the receptionist said, noting my confusion. Go through those double doors and you’ll find it.

And so we sit here again, some ten years since the last time.

In The Waiting Room.

Your name is called out. You have a name. Everyone here has a name. Of course they do. It’s how the staff know who they are dealing with. It’s how they know who is next on their list to be cared for.

Last time you were here you did not have a name. Last time you were here you quickly became an it to those who spoke of you. Including me. Last time you were here you were not known.

I wonder, if I had given you your name when we last were here, if that would have made a difference?

They said they could deal with it last time you were here. When they found out you might have an extra chromosome.

Imagine if I’d told them your name. Imagine if I’d had the courage of my convictions to have named you YOU back then. I wish I had, but I admit… I was scared. I did not know you either.

Now we sit in that room and I wonder if it’s the same chair. The trolley bed is in the same position. It’s the same room I sat in over two years before you were even born, weeks after nearly losing my life and that of your unborn sister. A room that holds so much trauma for me and, presumably, countless others.

The doctor kneels at your feet. You look down at him from your wheelchair, smiling. Laughing.

He gently wraps bandages around your badly damaged ankles and feet. He speaks tenderly to you, telling you what he is doing. Casting moulds for the support you so desperately need. He says you can have colourful casts if you like. He calls you Sweetie. He also calls you by your name. He honours you. He knows you.

This is not the first time he has treated you. Nor will it be the last. He wants only to make your life better. He knows what you need. He knows because he has met you. He knows because he has cared for many people like you before.

He knows you.

Last time you were here a doctor stood over you, whilst I patted you nervously, clutching your photograph. Many photographs were being handed out to people that day and everyday. You looked a bit like a kidney bean…. I’ve kept it, you can see it one day if you like.

You would not remember. He stood over me, over us. Kindly, gently, yet devastatingly, his words brought trauma to us both. And, moments later in the room opposite which I can see from where we now sit, another kindly professional spoke trauma over us both and even death over you. I carried you, like all the other patients in The Waiting Room that day. I also carried the leaflet they handed me, that told me what they thought I might like to do – about you.

I have no ill feelings towards them now; sitting here.  Those feelings have unexpectedly gone; I don’t need to hold onto them anymore.

Instead, I carry a sadness that the Doctors back then did not know what the Doctor who now kneels before you knows. I carry a sadness for every woman, every parent, who has sat anxiously in these rooms and experienced trauma; whatever decision they made, however they made it and whatever their outcome. So much fear, often but not always, of the unknown.

Fear causes stress and stress fractures.

Yet in this unexpected moment, my sadness is replaced by thankfulness. Fractures fuse as the healing process begins.

I am thankful for this room, for these other patients, for this Doctor who knows…who knows you. I am thankful that we have come to The Trauma Clinic today for it is a place not only of healing but of redemption.


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Silent

Kneeling….

A silent letter goes before you, shaping your reason, your purpose, your meaning, as you enter.

Unheard.

A shaft of dust-filled light through a blackened open doorway; bathing her and me in so much warmth, and reaching only just beyond this moment. This heaviest of doors has only ever opened so far and I am grateful for all it never reveals. Today is enough.

I’ve tried to push the door open further. Take it off even. What lies beyond its hinges? Is it what I imagine? What I fear? I wonder if the words she once began to form are beyond it, waiting to return. Or are they lost forever? Silenced. Perhaps.

I don’t even know what it is I hope for anymore, let alone what I can admit to fear. I dare not go there. No matter, my arms have long since grown heavy summoning a strength that I do not possess for a day that I do not own. Today is enough.

I sink to my knees beside her hospital style bed. Her room a contented mix of teddies and tubes, socks and syringes. Devices and daydreams.

I begin where I began yesterday, and the day before that, and all the days before that.  She dangles her damaged ankles and calloused, misshapen feet over the side of the bed and waits expectantly for me to put on her socks. Followed by her hard, unforgiving plastic orthotic moulds, followed by her clumsy, heavy leather boots. I hear every word she does not say. Her sounds reverberate a silent and mysterious speech. Her thoughts so profound she dare not speak them to those who have no appreciation for such mystery.

How can something so irreparably damaged be so beautiful? How can one be so silent, yet so noisy?

I have learnt that what is damaged should not always be thrown away.

I adore her damaged feet. I adore her sounds. I adore her.

I sink into the depths of this holiest of spaces, this silent, unheard place where love dwells and discovery awaits. Where deep calls to deep. Where tectonic plates of pain and despair seismically shift along plates of joy and hope. The cracks formed long ago, and because of them, not in spite of them, I am swept up by this tsunami of love I now have for her. Tsunami with a silent T.

I catch my breath that I am here at all, and so is she.

Kneeling, with a silent K.


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Merry Go Round

Half way up the stairs.

We made it half way up the stairs. She is on her stairlift. I am holding down the control button.

The alarm is, well, alarming. It’s shrieking….. I’m no longer green. I’m red I’m red I’m red. And this is as far as I can go today.

I disagree with alarmist opinions, I always have.

Yesterday you were green. They said you were fixed. They said they couldn’t see anything majorly wrong. They looked, they tweaked, they said they did their best yesterday and indeed you were green. They hoped their remedy was permanent. 

So did I; the cost is mounting and climbing higher than any stairlift could ever go.

Red, green, red, green, red, green

You, me, me, you. Today we both turned red.

I brace myself to lift her down from her predicament. Praying we do not topple. And I did actually pray.

Is this what it feels like to be rescued from a fairground ride? Stranded in mid-air whilst all around go about their business down below, busy on adventures of their own. A whole community, just down there. Out of reach.

We are high up. Hoping for help, though it does not come. Praying. Feeling very small, very alone. At least one of us is. The other not so. She has always loved fairgrounds. The lights, the colour, the spectacle, the drama. She is laughing right now. Unconcerned. All the fun of the fair is in her eyes as it always is. This is what blessing looks like.

Oh I too love the funfair, don’t get me wrong. It’s true I’m not all that keen on the Helter Skelter or those swingy things that send you hurtling through the skies at breakneck speed. And the Dodgems – well they are just plain dangerous if you ask me. But find me the Hook a Duck stand to try my luck with, or a colourful Carousel with painted horses and I’ll happily hop on and go round all day.

A fairground is a place where screams are many yet, no one hears them. They are not required to. Laughter, joy, screaming, fear, exhilaration, merge into one, giant, merry-go-round. Pleasure and pain. Pain and pleasure. Pleading to get off then getting back on for more. Fearful moments soon overcome by joyous ones, then replaced by fear….and so it goes on.

We are downstairs again, yet we need to be upstairs. She needs to sleep so we cannot stay here. Now there’s another obstacle in our way. It’s the same but different. Still alarming, still flashing and now IN OUR WAY. Reminding us of the journey we now face. A perilous one. An uphill struggle; each of my steps must now be carefully and very slowly taken for fear of us both tumbling down the stairs. The chair is not moving, no matter how hard I plead with it to work. Please just work. I scream a scream that no one hears. Not even her, thankfully. Only one of us feels the fear on this particular ride. The other knows only love and trust. This is what blessing looks like.

One day I will laugh at this too, just not today.

One day the plan will come together. A crowd will gather around us. Tradesmen and women will set to work to help her; and to help me. The stairlift will no longer be required to transport her to sleep each night. She will sleep downstairs, safe and sound in a new environment that can truly meet her needs. One with new rides to experience, buttons to press, levers to pull, hoists to take her into orbit. We will laugh with great gusto at ourselves in front of distorted fairground mirrors, knowing that our true self remains intact. Dignity will be restored. Hers and mine. This is also what blessing looks like.

Just not today.

Tonight we will dream of carousels and candy floss and all that this fairground means to us; we are certain we do not ever wish to leave.


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Perle di Saggezza

(Pearls of Wisdom)

Image by moritz320 from Pixabay

Eighteen months ago or so, you will undoubtedly recall, hand-painted rainbows began appearing across the country of Italy, at the start of the Covid 19 Pandemic. Strung from balconies where Italian citizens resided, unable to leave their homes and now trapped in a place of fear and uncertainty. The banners were often emblazoned with the words “Andra tutto bene” which translates asEverything will be ok.”

Some citizens began to sing from those same balconies to one another. Accordions struck up, Sopranos serenaded, Baritones bellowed. And, before long, it seemed like the whole of Italy was singing. As the New York Times put it, Italians had found “A Moment of Joy in this Moment of Anxiety”.  Songs erupted from people who were clinging onto hope as well as learning to be thankful for the expertise of the medical profession that they were now so very dependent on. Something similar happened here in the UK with rainbows appearing all over as well as clapping and cheering for the NHS; though we never quite mastered the singing. That’s best left to the Italians – always.

A song, from the heart, is a precious thing indeed, and Italy will always have a very special place in my heart. Some of my family are Italian and have lived there all their lives. They too, draped a huge rainbow banner over their balcony, and sat behind it daily, looking down onto their fishing boats and nets from their centuries old home in the beautiful town of Sorrento in the Bay of Naples. A place so deeply loved by locals and tourists alike that it has a famous song of its own Torna a Sorriento. Yet this beautiful place was now filled with fear and uncertainty. Hope was called for, fearful hearts needed a new song to sing. And as they sang, so hope spread, even inspite of their circumstances.

Ten years ago, my family GP was the first medical person to say anything positive about what life might be like with my baby who had been born and then diagnosed with Down’s syndrome. We’d just come home from two traumatic months in the hospital NICU and I was struggling to come to terms with her diagnosis. Our GP was the first person to give us hope that we would be OK. That we would be more than OK in fact. His words to me were so much more than medical and exactly what I needed to hear. He said that life with a child with Down’s syndrome would be an incredible journey and I would meet some amazing people. He did not sugar-coat or minimise the challenges we were facing; there was no need, we were already up to our necks in plenty of those, medically speaking. He simply sat on the end of my bed, metaphorically leaned across, and in one sentence, opened a new window onto a brighter view. One filled with a more colourful sky which, from that moment on, began to chase away its gloomy predecessor. A vista that slowly began to fill up with the possibilities of a life of love and of loving.  His years of experience as a family Doctor told him that there was indeed still a life to be lived and loved. Hers, ours. He was not afraid to gently tell me so.

My GP has recently retired and so I took the opportunity to write to thank him and tell him how his words had made a life changing impact on me and my family. I have been told that he referenced my letter in his retirement speech, which has touched me no end.  You see, somewhere over the years, the hope he gave me as a frightened and overwhelmed mum, fearful of what an unknown future might hold for my little girl with an extra chromosome and for our family, has evolved into thankfulness on my part.  I felt it was important to say thank you for something so precious and transformative. For something better than any prescription, test or medical solution, helpful though those things may or may not be. I wanted him to know that I am forever thankful for his wisdom

Wisdom – from the heart, not just a text book – is a precious thing indeed. A pearl of great price.

Facts are undeniable, but finding hope to live with them, beyond them and inspite of them is where a diagnosis can become a beginning not an ending. My sincere hope is that every parent who is fearful on getting a diagnosis of Down’s syndrome, as indeed I was, finds such a pearl. I hope they too will find continued support from those who will help them to prise it out of its shell and wear around their neck as their pride and joy.

Italians know a thing or two about life; about singing songs of hope, of love, of loss, of joy and of sorrow. Their language is rich and heavy with the beauty of these things.

And I think, though I’ve never enquired, that my GP may possibly be fluent in it.

La Vita e Bella, si?


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Listening to you

Photo by Brands&People on Unsplash

Two terrible words were spoken with some force over my non-verbal, severely disabled daughter recently. A moment of frustration by one who briefly had care of my child and ought to have known better, but, for whatever reason, didn’t. I write this not to invite a pile on or indeed look for sympathy. Their words alone have brought enough shame on them, whether they know it or not. And they remain a good person who made a mistake. This is not about them.

But their words did damage.

Not so much to my child; as in an apparent, one-off moment of uncontrolled frustration, the words spoken went literally and metaphorically over her head. She could not/did not understand them, though she may have felt their force. Others heard, however. Worse still, another child heard. And that matters.

In the space of two brutally uttered words, a story was told to anyone in earshot, especially that other listening child. A narrative of shame. I wasn’t there to hear them spoken first hand and indeed I was calm as I wrote them down on a post-it note during a phone call I don’t think I’ll ever forget.

As I did so, my mind began to fill with many more brutal, ignorant words that have been spoken over her by others People who have had an audience of others to hear them.

Risk. Burden. Problem. Tragedy. Sorry. Terminate. Deal with it. Get rid of. Did you know before hand? Didn’t you take the test?

Words that hurt then but more so now, alongside words of comparison that continually attempt to steal my joy. Not her joy, thankfully. That appears to be intact.

Words that suggest she is unworthy of life itself. That being human can’t surely mean including people like her. Genuinely? I think she embodies being human; and….quietly, simply, she includes the rest of us without question.

Lately, I’ve more keenly felt this unworthiness that is pinned onto her life in so many ways. Whether it is the lack of good health care and research that doesn’t just label each problem we encounter as ‘typical Down’s’, or the lack of opportunities for her to be fully part of our wider local community. Then there are the barriers around her physical development that do not seem to be there for children without a Learning Disability. Or perhaps it’s her future, and ours. What will become of her? What kind of opportunities will she have as an adult? How will we/she cope? Who will care?

This incident simply served as a trigger to all those feelings and more.

I closed the call and found myself in pieces.

She lives her life at the very opposite of the words spoken forcefully over her by those who do not know her or even wish to know her. Words spoken perhaps through fear of what they do not understand. Or in anger towards that which appears out of their control. They make sense of these emotions by framing her in the closed doorways of their own prejudice.

She is positioned to suit them. Their narrative. Their take on the world. Their needs. Their concerns. And she remains outside the door. Hurting no one yet on the receiving end of cold, harsh judgements.  Others then hear this narrative and are empowered to proclaim it too.

Yet I am thankful that there are those people in her life whose doorways are open. They position themselves before her, at her feet. In front of her wheelchair not behind it or above it. Many of them. Not least her teachers, respite providers, disabled community support workers and volunteers, her family and our friends and more. People who take up a position not in some kind of worship, adoration or even deference, but a posture that looks up at her in order to learn and care. Not one that looks down in order to control.

The spoken word may carry truth, joy, hope, compassion and ultimately life to the listener. It may also carry fear, anger, pain, confusion, untruth and even bring death to the hopes and dreams of whoever might be listening.

Narrative:

A spoken or written account of connected events; a story.

The narrative about my child, and others with Down’s syndrome or other Learning Disabilities, has been collectively written. It is then spoken out by and to a society that stands above them instead of kneeling down and facing or even looking up at them. Control, fear, and, perhaps, an unwillingness to humbly learn from a different other.  It’s the natural response for many and, before I knew my child, I was guilty of it too. This post is not about the condemnation of anyone. 

I am thankful for those who open their doors, welcoming my child in, then daily kneeling down in front of her to care. Their words and actions are life giving, not soul destroying. They help rewrite her story.

And, because of them, her story has become a sacred text; highly valued and important amongst the Chronicles of what it is to be Human.

Reader, if you’ve read it, please pass it on to someone who has not; for no one should ever be called a stupid girl.


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Weightless



Experts.


They said I should grieve, the day you were born.
Mourn the child I had imagined.They said it was ok. To be expected. 
Deep down I knew this not to be true. 

The same experts

Gave me permission to end your life, before you were born. 
They said it was ok. To be expected. 
Deep down I knew this not to be true. 

Other experts told me I had simply arrived at a different destination. The plane had been diverted to somewhere new.  
Deep down I knew this not to be true. 

Each expert expertly dishing out a new sense of entitlement to add to my collection.

Gathering up our things, we left the hospital some weeks later. Your eyes wide with adoration and wonder, you carried in your arms only dependency and a total acceptance of all you met.

My eyes wide with adoration for you. Yet wide also with fear
at how I might protect you or worse, fail you. I carried you, tightly, so tightly, in my arms. You weren’t that heavy. Yet you came weighted down. The scales of injustice, entitlement and expert opinions tipped heavily against you, but in reality, weighing me down, not you.


You were even given a different chart to follow in your little red book. The shock of the standard, socially acceptable, growth chart being ripped out in front of me – as a sticking plaster is ripped from a wound – will stay with me forever. You won’t be needing that one, the expert said. 

And in this post neo-natal world that we now live, you and I; we are almost a decade on. We now have a collection of expertise and entitlements to fill a library. More recently, Pandemic life has brought out all kinds of new publications. Hospital appointments/therapist meetings, education meetings and more all take place via a computer screen. And, faster than you can say “lockdown”, I can spin around to my zoom backdrop of strategically placed books, and whip out the relevant chapter and verse to quote to whoever will listen. I can read them my rights. Your rights. We have lost so much this past year and ‘Someone’ needs to give it back. You are entitled. I am entitled. Now I’m the expert.

Pandemic life has, I think, brought out so much entitlement. Bookcases are groaning under the weight of expectation. Rights.  

Yet never once have I seen this entitlement in you. It is a weight you steadfastly refuse to pick up let alone carry. You have no need for this burdensome thing. ‘Someone’ can keep it.
Every day you tell me to put it down, though you never say a word.


You are the expert. You always have been.
In humility. In being human. In welcoming another’s life, not mourning it. In asking nothing more than to be loved whilst you freely give of your own endless supply. In moving on to the next experience once one has ended. You were always destined to be here. Not somewhere else.

You are the expert In showing me how to live my own life. You have shown me that I do not have to carry the weight of entitlement for it is a false prophet. I have not given anything up, lost anything, been robbed or have need to mourn. None of it was mine to own in the first place.

With your extra chromosome – oh what a gift I have been given! Undeserved. Not entitled. 

Gifted. 

There was never any need for grief when you were born. Or any other weight placed on you or me since, for that matter. Your very being tips the scales of what is deserving and honourable. It turns the wisdom of the wise upside down. Weightlessly so.


Deep down, I know this to be true.


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Barefoot

Image by Pezibear from Pixabay

Dear World Down Syndrome Day Supporter….

Thank you for wearing odd socks in my honour.

They’re a talking point, colourful, and fun to see.
I’m just not too sure they are really about me.

Rename them ‘lots of socks’ if you prefer, instead of calling them odd.
The thing is, I’m neither odd nor plural. There is only one of me.

Ah but socks look like Chromosomes you’re keen to explain.

Yes they do, so true, yet you also have those. Minus one of course, but otherwise you’re just the same .

You, me.

Both should be rhyming with humanity.

Oh please don’t feel got at…I’ve worn mine too!
I’m always up for some fun, often much more than you!

Socks.

It’s just you gave me some last year, and the year before that.

And I’ve noticed a pattern forming. A habit; one that leaves me a bit flat.

These socks keep coming, year after year.
That’s nice… but there are other things I’d very much prefer.

When I’m older, I might like a job; will you help me find suitable employment?
Or invite me to your parties, welcome me, enhance my enjoyment?

Include me at your meetings, give me a seat at the table.
See me as your equal and perfectly able
to contribute to the conversation however I can and whatever the subject may be. Especially, no –always – if the subject is me.

Support research into my health so I can live well, like you. Stand up for my rights, remove all taboo.

Help me learn new skills, give me roles to fulfill. I’m very keen to be active and not forced to sit still.

Just imagine – with nothing to do, your days spent at home; you’d get bored very quickly and feel quite alone.

Don’t stay silent when others say my life has no worth.
Their influence is strong; complicit in deciding the fate of another, well before birth.

Champion me, not only with socks, but with all you can muster.
Stand up for me, defend me. Be a myth buster.

Give those who will love me all the help they may need
To nurture me, teach me, help me succeed.

Don’t abandon them or leave them – at times -feeling so alone.
Give them all the support you are able; help set the tone.

So wear the socks if you like; the bright colours I love and am happy to see.
So long as you then take them off and walk barefoot with me.

Gratefully yours,

Hazel x

The DSRF are the UK’s only Down’ Syndrome Research Charity. Their vision is a long, healthy, happy life for people with Down’s syndrome (DS) and their families. The Foundation is a charity born out of a parent’s love and a passion for the very best evidence-based interventions. You can donate to their work if you wish here.


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By rights

Girl drawing in sand

By rights my child should be talking by now. She’s 8 years old you see.

By rights she should be running around; climbing, jumping, falling and scraping her knee.

By rights these are skills that are just delayed.

She’ll get there in her own time, don’t fret.

Her extra chromosome is championed by those of us in the know.  Though I think even we get it wrong by the examples we hold up for inspiration:

Actors, dancers, TV stars, athletes, some are even politicians. Look how much these people with their extra chromosome are contributing!

As if they need a reason to be here.

Nothing to fear they tell me; she’ll make her own way in this world like them.

By rights.

By rights my child shouldn’t even be here. Such is the overwhelming view of the world to people like her.

By rights I could have deleted her life. I should have done so, according to some and by rights for which others have fought.

My choice? My right not to do that?

Of course! But you’re on your own.

Stop. Let’s go back to the beginning, where it all seems to go so wrong.

So very wrong and not at all about rights.

 

My child’s very existence is a cry to be loved.

She is not to be measured on a scale.

Scales of achievement that judge her, proclaiming her worth in how much she can bring to the table.

By rights she may never measure up to societal scrutiny, or even that of her own community. Who knows when or if she will talk or run?

Truthfully, she is not here by rights – for society says she has none.

She is here by love.

It is love she is attracted to. Not achieving or being the best. She has no desire to acquire more knowledge or power or fame, or the rest.

She has a desire, a need to be loved. Let’s face it, don’t we all?

She is not here by rights, she is here as a gift.

A priceless gift of discovering that to love is not always easy, but is of greater value than anything else.

 

Tell me…. what gift was ever a right?

 

“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.”
 Jean VanierBecoming Human

 


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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.