Downright Joy

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


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Show me your face

Hiding face

Show me your face and I will show you mine.

Confession time.

When my daughter was born with Down’s syndrome, I am ashamed to admit that, at first, I wanted to hide her away. I tried to dress her in a way that people wouldn’t notice certain features pertaining to her condition; her slightly thickened neck for instance. A well placed chunky knit cardigan dealt with that! As we struggled to come to terms with her diagnosis, though we loved her with every fibre of our beings, my husband and I spoke privately of a hope that she would have some sort of ‘Down’s syndrome light’ variety. A not too noticeable version of the condition that would be acceptable to others and also, it has to be said, to us. As for thinking about other people, especially older people with the condition, this was not something we wanted to contemplate. In our eyes, they were to be avoided. Feared even. In fact, looking at anyone else with the condition was hard to do back then, though I did try to notice the ones I deemed acceptable – just about. All in the hope that my child would be like them.  Not too bad.

Our eyes were focused, not on our child, but on our prejudice.

Eight years later and laser surgery has removed that prejudice and cleared our vision. Thankfully. Or was it heart surgery? Either way it is gone.

This week, a film made about a man with Down’s syndrome, Jamie and his brother and family, appeared on social media. Radio 4 even did a feature on it. You can watch it here if you like. There was quite a reaction to it in our community. Some, like me, loved it, others including people whose lives I hugely respect, didn’t. Among other important things, they worried about how Down’s syndrome was portrayed in the film, especially to new parents or parents to be who might see it. It was absolutely not their experience and it appeared outdated, a backward step even. Some found it sad.

As the dust has settled I can see why they felt like that. I just don’t agree.

A wise person said to me that the film was like a mirror. Reflecting back so much of our own fears and, I think, our hopes too. Well I’ve been reflecting in that mirror since I saw the film and my wise friend is correct.

I’ve spent the last seven or eight years telling people, sometimes through my blog but in other ways too, that there’s nothing to be afraid of in having a child with Down’s syndrome. I’ve told them about all the things children and adults with Down’s syndrome can do now, achieve, be, aspire to; compared to in the past. And this remains all true and valid. I love how our community celebrates this change in all kinds of ways as more and more is understood about the capabilities and learning potential of people with Down’s syndrome. I hope we never stop making this known where it needs to be known. But it is not the whole picture.

So here’s my next confession…

Through my writing, I’ve told people these things, which I wholeheartedly believe and support, against the backdrop of knowing that my daughter is not like most children with Down’s syndrome. At least not most of the ones I know. She is more like Jamie. She sits how Jamie sits. She sounds how Jamie sounds. She has fewer words than Jamie has, yet she was not born forty years ago in some dark, uneducated era where early intervention for people with Down’s syndrome was largely unheard of.

No. She was born just over eight years ago in 2011.  She’s had far more support and intervention in her young life than Jamie would have had in his – at least outside of his loving family – oh I loved them in the film too! Their faults, their failings but mostly their love for Jamie and each other shone through.

Could we be doing more to help her development? Always. Is she still failed by healthcare systems and Government policies towards disabled people? Yes, frequently so. But that’s not the point here.

What’s true is that she is more like Jamie than most other children I have so far met who have Down’s syndrome. That is not to diminish them or their families in any way; I hope I no-one feels that’s the case for it’s not my intention. It is simply that our experience is one that is far closer to that of Jamie’s family. His face, his life, his behaviours and reactions we recognise in our own daughter. His family in ours. Even in the words they used to speak to or about him. And our lives are not some tragedy to be hidden from view.

Unconventional? Certainly. Challenging? Definitely. More so than I have ever admitted in my writing and that, with hindsight, has perhaps not always been helpful.  Even as I write, we should be elsewhere, joining in with an event that most people have no problem attending, even most of those with a child with Down’s syndrome. We are not most people.

Neither are we always looking for lots of inclusive activities to take her to. Though it’s sad there are not more. Because more often than not, even the inclusive ones are unsuitable for her. That will only change when her ‘face’ becomes an acceptable ‘face’, a face that is accepted as it is now, with all its funny ways and behaviours, noises and responses. It will change when her way of communication, as it is now, not as it might or could be, is accepted and welcomed, if not always understood, by everyone, not just a few people. Some call it her level of communication but that, to me implies critique. What I want most is for her always to be accepted, welcomed and wanted as she is. Not because of any intervention or achievement that might somehow make her a more positive advert for her community, however helpful it may be to her or anyone else. I think most parents want that too.

Hazel brings something different to our family. I saw it in Jamie’s family too. She brings people together, to surround her and each other. She brings a kind of healing, she brings mystery. She brings dependency.

Ah, but we need our children to grow up to be independent don’t we? That is, after all, one of the aims of most parents – to help their child grow up to be fully independent and make their own way in the world.

And yet Hazel has taught me to prefer the idea of a society where we grow more dependent on each other, not less.

The reality is far from that though and I think it’s one of the reasons people reacted with concern to the film. I get that.

I don’t think it’s wrong to hope and strive for a society where dependence on each other is highly valued. If our society was like that, then many of the fears that keep parents of children/adults with Down’s syndrome or other disabilities awake at night would not exist. We could be confident that our loved ones are going to be valued, cared and wanted for who they are, regardless of their level of dependency and regardless of whether we are here to care for them or not.

A mirror should always reflect the truth and perhaps I am guilty of distorting the image of our lives in order to gain the acceptance of parents who might be considering terminating the life of their unborn baby, following a diagnosis of Down’s syndrome. Yet the truth still is that all people with Down’s syndrome, whether they are like Hazel, Jamie or whoever, have beautiful faces and can live beautiful lives, whatever their challenges. Their stories, our stories, all deserve to be told and it is a privilege to be part of a community that is dependent on each other.

Let’s not hide any one of us away.

Adam Pearson A British Actor and Campaigner and who is also diagnosed with a genetic condition said recently “The way to eliminate any kind of misconception or prejudice is to increase the exposure”

Show me your face and I will show you mine.

“Fear makes strangers of people who would be friends.” Shirley Maclaine

H in Mirror WM

 


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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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Beautiful Brilliance

IMG_4825

Our week, almost at an end, has been spent in a lodge, beside the most beautiful, tranquil lake in the heart of the Devon countryside. After a hectic and very emotional end of term as my daughter moves on from her beloved school to new beginnings, a few days to simply stop, breathe and clear the lump in my throat was just what I needed.

The local heron, ever present with its majestic flight up and over the trees, alighting daily on the bank for a spot of sentinel feeding. Moorhens and their young, swimming like dancing Egyptians back and forth. And swifts. So many swifts. Appearing out of nowhere, feathered fighter pilots storming the sky above the lake, feasting on the myriad insects gathered there.

But one particular lakeside dweller has, all week, evaded me. The Kingfisher. That most visually eloquent yet elusive of birds. Despite my constant attempts to spot it, I have failed. Until just now.

I’d done all the right things…got up early to catch it feeding, hidden myself behind the trees so as not to scare it. And I’d prayed…as I often do. Nothing.

So, today, after my early morning trek around the lake to find it, I sat down outside the lodge and admitted defeat. Perhaps it was nesting elsewhere this year. I prayed a final but very grumpy prayer. Please let me catch a glimpse.

Seconds later, and I mean seconds, I saw it. Unmistakable flash of brilliant blue and orange streaking across the far side of the lake. I’d seen it. That was enough for me. I was happy. But there was more. Much more. A pair of Kingfishers darted here and there, right in front of me. An acrobatic air show of the finest order.

And I realised something. This visual feast, this Kingly display had been there all the time. I just needed to stop looking so hard in one area, for what I wanted to see, but open my eyes to the entire landscape.

In the Down’s syndrome community, and in life, it’s easy to feel pressure to see faster progress in your child’s development. Milestones that should be reached and ticked off an imaginary list. Sitting up, standing, walking, talking, or even toileting. And when our children can’t or don’t reach these milestones when we thought they would it’s so easy to feel discouraged. That we must be doing something wrong. That it’s our fault. That’s not to say we don’t push for them or encourage them to reach their full potential. But what is potential?

My child may not be able to walk very far and she doesn’t have many words. She is not yet able to fully feed by herself and is reliant on a feeding tube. Yet her potential is being realised every single day regardless of these so called limitations, or unmet milestones. Every day she shows love, joy and compassion to those around her. Every day she breathes life into our environment with her laughter and her sense of humour. Every day her life, her very existence, reminds us to give thanks for the transformation she has brought into our lives. Her sister’s life – enriched beyond measure as she instinctively and lovingly cares for and delights in the adoration of her sibling. The richness to be found in a person with Down’s syndrome, and that can be found in her too, is incomparable.

Whatever this world has in store for her life, however good, will never be able to equal what she has stored up and brought into our world. It’s a sadness to me that so many people won’t even catch a glimpse of this beauty, this brilliance in so many people with Down’s syndrome. So focused are they on achieving their goals they believe the lie that society has told them – that Down’s syndrome is a risk to their dreams and successes and must be dealt with – the earlier the better, preferably before they are even born. Brilliance not even given the opportunity to be seen.

I want brilliance in my life. And not just inspirational glimpses. I want more.

I have it thanks to my child with an extra chromosome.

Beautiful brilliance.


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Cheers

Cheers TV titles Screen shot

I have a nostalgia for certain 80s & 90s American TV sitcoms. The moment I hear the opening few bars to, say, Cheers, for example, my mood lifts, however I’m feeling at the time.

Set in a bar in a Boston, the regulars and the workers all share their lives and experiences with each other. The highs, the lows; the trials, the triumphs. If, like me, you stayed the course of 11 years and 275 episodes, you got to know and love each character. The bar, the decor, the stories, the romances, the heartaches, the people. That theme song:

Sometimes you want to go

Where everybody knows your name

And they’re always glad you came…..

I felt sad the day Cheers ended. Of course it had to end. Everyone was getting older for one thing. Nothing stays the same. Life moves on. Still, I was sad.

This week, my daughter, Hazel, moves on from the only school she’s ever known. She’s been there nearly eight years; since she was two months old.

It’s her school but to us it’s so much more. It’s a place that has not only nurtured, cared for and educated her but us too. A family centred school.

It’s the place that scooped us up and surrounded us with support in those early, traumatic days when she was a poorly baby. The days when we struggled to come to terms with her diagnosis of Down’s syndrome and of what we mistakenly thought that meant for her future, for our future. I was very focused on that diagnosis back then. Unhealthily so. Hazel’s school is the place where I learnt that her diagnosis was not nearly as important as I first thought. It’s the place that helped us find, adjust to and embrace a new ‘normal’ in the midst of all the uncertainty and upheaval that we were facing. It’s the place where I found hope for a new kind of future; a joy-filled one.

A practitioner from the school came to visit us when Hazel was around nine weeks old – barely just home from the hospital NICU – to invite us to join their baby group. At that point I was still in a state of shock and unprepared to be thrust into a world of disability and special needs, let alone special schools. I remember asking her about the other children in the group. What were their diagnoses? What did they have? What was wrong with them? And though I may not have used those exact words, it’s what I was thinking. I’m so ashamed of those questions now.

Her upbeat answer surprised me: Oh, I don’t know!

Actually, I’m sure she did know, but the children’s conditions were not foremost in her mind. Their names, however, were. She knew them by their names. Harry, Ruby, Jacob, Louise*……children. Each with a name, not a diagnosis.

This school is a place where everybody knows your name.

And they’re always glad you came.

Mainstream education, or indeed society,  has much to learn from a school like this. There should really be no need for a policy on ‘inclusion’ when your starting point is the child’s name and not their disability.

This school is a place that has grown so familiar to us. It is our safe place. Our refuge in the tougher times when we’ve needed a shoulder to cry on. Our happy place when there has been so much to celebrate. A place where many new friends have been made.

So many joy-filled days.

Treasured memories.

Hazel’s happy place.

And as we now must say goodbye to this beautiful, caring, extraordinary, award winning school, we are sad; though we know it is time for Hazel to move on.  We are filled with gratitude for Hazel’s teachers, therapists and support staff; past and present. Whenever I see the word excellence I think of them. People who continually go above and beyond their official duties and who are, without doubt, the reason my tube fed, disabled daughter can now walk a few steps or even eat some actual food. People who have crafted and shaped a hope-filled future for Hazel. People who care deeply about all the children in their school and who constantly look for ways to bring out their full potential.

I love how Stephen Kelly, writing about Cheers in the Guardian in 2018 puts it,

 “Cheers, after all, always knew how to recover from setbacks. It was sturdy, consistent, familiar – a place where everybody knows your name.”

Thank you to every single person at Hazel’s exceptionally special school.

We’re so very glad we came.

“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 Vanier, Becoming Human

*Names changed for privacy.


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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