Downright Joy

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


4 Comments

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 It was absolutely not their experience and it appeared outdated, a backward step even.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

 


8 Comments

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

 


9 Comments

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


4 Comments

Camino

Camino pic

I’ve long been fascinated by the Camino de Santiago; a network of pilgrimage routes leading to the cathedral of Santiago de Compostela in North Western Spain. Known also as The Way, it’s a place where, according to tradition, the remains of Saint James the Great are buried. It’s a route that has become popular not only with pilgrims, but also hikers, cyclists and others looking to challenge themselves as well as looking for something else, something deeper. A pathway walkers often say they tread to find peace and a new sense of purpose to their lives. A restorative ramble in a remarkable landscape.

A highway to hope.

I would love, one day, to go on the Camino and experience if for myself, though given my less than enthusiastic approach to camping, hostelling or living without my home comforts, I’m not sure if I am really up for the challenge. Yet I am still drawn, not just to the beauty of the pathway itself, but to those who tread upon it. Countless lives that have walked that pathway for all kinds of personal reasons. Some religious, others not. Each story important and relevant, in some way, to all those who walk it. Why did they take that pathway when they could perhaps have found an easier way to relax and find inner peace?

I think the answer lies in the hope that they find along The Way. Hope that wells up as they experience its beauty, its ruggedness, its challenges. Hope freely given to them as they meet different people, from all walks of life, from many different countries. They may go there for all kinds of reasons of course; exercise, well being, a chance to experience a different culture. But hope. Hope is often what spurs them on.

Hope is often the overriding factor in most of life’s major decisions. It can be found at all life’s twists and turns. At crossroads in our lives we look for its signpost. As we enter new relationships, contemplate a marriage perhaps, start a family, or look for a new job, new home and so on we look for it, find it, and take it with us. We may pore over all the facts in our possession and weigh up the risks involved in making big decisions. But we almost always make our choices with a measure of hope that is just as important to us as what we already know.  Hope is vital. It is a pathway we must tread, though it may make us vulnerable.

Hope is the reason I write.

The pathway I now follow is not the one I was signposted to. Eight years ago, on discovering at my 12 week scan that the baby I was carrying might have Down’s syndrome or some other genetic condition, doctors pointed me in the direction of another pathway. Society also pointed to it and still does. They said I should follow the road that will get me out of here. One, they told me, would be the best for me, and for my unborn child. A pathway that would lead me to a place where I could simply try again. They saw no hope for this child, only suffering and misery, leading to death sooner rather than later. They looked only in one direction. No one told me about the other pathway, the one I am now on and which I had to find for myself. They didn’t give me a choice, though they claimed they were. This pathway isn’t easy, I’ll admit. Yet it is a pathway signposting hope. A pathway filled with many people from different walks of life. Some of those people saw it and chose it, others found themselves on it unexpectedly.

At times, the terrain is rugged, challenging and exhausting. It’s at these times you can quickly come across others on the path who know how to find a way through. People who can steady you as you climb over the stiles or tell you the best places to find help or rest. And though the ground beneath your feet may at times feel rocky and unstable, the view is breathtaking. The beauty to be found along The Way is what keeps you going. Always changing, always something new to marvel at, be thankful for and draw strength from.  For all the challenges it is still a pathway you are glad beyond words that you discovered.

For any woman and her partner who is being signposted in only one direction by doctors, or society or even their own personal prejudices (and I had lots of those, believe me) please know that there is another way. A crossroads has more than one sign. Step aside, look behind whoever or whatever is in front of the signpost and realise it also points in another direction.

It points to another Camino.

A highway of hope.

For lived experience of what it is like to bring up a child with Down’s syndrome check out these websites and meet others who have discovered hope in similar situations:

Positive About Down Syndrome

Wouldn’t Change A Thing

 


14 Comments

Framed

Today is my birthday. It’s a big birthday.

Its ten years since my last big birthday. The biggest birthday I’ve ever had, though there was and is no zero on the end of it.

Ten years since I woke up in hospital, 29 weeks pregnant, surrounded by monitors and hooked up to machines. A nurse stationed at the foot of my bed. I’d spent a week in Intensive Care as doctors fought to save not just my life but that of my unborn baby. One by one, my major organs gradually shutting down. My husband told to expect the worst; doctors didn’t know if either of us could be saved. I was hours from death.

Ketoacidosis- a condition I’d never heard of, had crept up from nowhere. We had been enjoying our last holiday before the baby was due. Brixham; a pretty little fishing village on the Devon coast and a place I’ve not been able to revisit since, such are the painful memories it evokes. The holiday had to be cut short. It’s a condition that is fatal if not immediately treated, brought on by poorly managed or untreated diabetes. As I’d had no previous indications of diabetes in my pregnancy it was a mystery why I became so ill. So unusual, that doctors later asked my permission to write a medical paper on me for their journals.

I woke up and the doctor wished me happy birthday.

For ten years I’ve always considered it a terrible birthday. On my discharge from ICU, I was offered counselling- such was the potentially traumatising effect of a week in ICU.  I declined. I felt no need – I had survived and so had my unborn baby. I had something wonderful to look forward to and that was enough.  Over the years I’ve pondered on the experience more so. Only recently discovering, for example, that the weird hallucinations I had whilst there were as a result of the cocktail of drugs being pumped into me. Perhaps if I’d taken up their offer I would’ve known this.

It’s taken ten years for me to celebrate that birthday. May 7 2009 is the day I got given my life back. It’s the day I knew I was still going to be a mum.

It was the start of the next ten years.

Ten years that have brought much joy into my life as well as difficulty. Ten years that have brought formal diagnoses including Down’s syndrome, Dyspraxia, and recently Autism into my life through my children. Diagnoses that, at one time, would have filled me with fear but that have instead brought me into the most amazing community, and given me two unique children who, along with the challenges, bring me indescribable joy.

There is much talk in the Down’s syndrome community about changing the narrative around a diagnosis. A well-worn phrase that I wonder may be past its sell by date. Too clichéd perhaps; I’m not sure. Yet the desire behind it to see a story told differently is one I applaud. For so long, pregnant women have been told of the ‘risks’ of having a child with Down’s syndrome. These are well known and documented. A quick google search will (sadly) bring up all kinds of fear inducing scenarios for a new mum; many of them based on outdated and frankly incorrect information, using terminology long since thrown into Room 101 by those who know better.

A snapshot of my own experience in the last ten years shows there’s much to be done. Ten years ago doctors fought to save the life of my unborn baby at 29 weeks. A little over two years later and doctors and midwives in the same hospital were telling me I should consider aborting my second unborn child even up to birth if I wanted.

Why? All because of a possible extra chromosome and the fears surrounding it. One life worth preserving, the other disposable according to their rule book. Though I am thankful to the doctor who, after initially offering me this ‘way out’, apologised saying he wished he didn’t have to but that he had to ‘follow strict guidelines’. The stats bear him out. Over 90% of babies found prenatally to have Down’s syndrome in the UK are routinely aborted.

The story of Down’s syndrome played out in many hospitals and clinics is a story that needs to change because it’s not the whole story. Parents are given only a snapshot of what life is really like with an extra Chromosome. And that snapshot is often out of focus. Framed in such a way that obscures the joyful reality of loving a person with Down’s syndrome.

It’s not lost on me either, that my first child – the one doctors fought to save has since had more than her fair share of challenges; diagnoses of conditions we didn’t know she had in utero. Yet no one ever suggested terminating her life. This will change if the proponents of pre-natal testing get their way and more conditions are targeted in the womb. So much they will be able to tell you and yet so little.

Ten years ago I almost died. A horrible, dreadful experience.

Ten years ago I was given a chance to live.

Ten years ago the doctor stood beside my bed, a week after he said I might not live, and wished me happy birthday.

Ten years since he and other skilled professionals saved my life and that of my baby. Ten years since many people prayed for me. A few came to ICU and prayed over me.  Some are no longer here themselves. I’ll always remember my dear friend Vicky (whose birthday I shared) getting past the tight security that would only let family or clergy in. Vicky was not one to ever let protocol get in her way and she came to hold my hand, praying as I drifted in and out of delirium.  I don’t understand why she is no longer here and it hurts my heart, but I smile at that memory.

So I will reframe my birthday of ten years ago. I won’t change the story by wiping out the painful, difficult, anxious, terrifying parts. But I will celebrate all that was good and all that began that day. I will stop remembering it in mournful, self-pitying tones but rejoice in the new life it began.

I will look at the whole picture and put it in a new frame. Some stories are worth telling from a different perspective.

Happy Birthday to me.

Dedicated to Vicky Taylor.  

100_1783

Miss you Vic, happy birthday x

 


8 Comments

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.


6 Comments

Poetry in Motion

Butterfly poem

I’ve discovered a love for poetry in recent years. A passion awakened by hearing the late, extraordinary Mary Oliver read her poem Wild Geese’. An experience that had a profound effect on me at the time. Now, her words, hand painted, hang from my living room wall. Words that made me gasp and caused my heart to sing. Words that still do. The power of the spoken word, especially spoken by the one who crafted it,  is immense.

I’ve always imagined sharing these treasures with my children. And I’ve started to, with my eldest. I shared another poem, by the same author I worried’, with her recently. Her anxious face lit up as I read. Someone else knew how she felt. It gave her confidence. It affirmed her. She was not alone. She loves words too and is beginning to discover the sheer joy of poetry. Of words used well.

My youngest child, who has Down’s syndrome, is largely non verbal. She has very few, if any words. She may not yet have the words to say to us but our words matter hugely to her. And poetry is, it seems, a powerful form of expression for her too. The spoken word. Only the other day, I found her looking at the Ipad over her sister’s shoulder, as they watched Michael Rosen perform a poem he had written. She could not repeat a single word but was utterly captivated by his expression, his story telling and his passion for the subject – Chocolate Cake. He brought words to life and enabled her to share in his delight. Unlocking a subject she knew little about in a glorious way. There’s nothing quite like the joy of hearing a non verbal child laughing like a drain!

Words, or more importantly, how we use them have the power to unlock or close down.  As we approach another World Down Syndrome Day I see many people online spreading a message through their words and pictures of what life is really like to live with Down’s syndrome. Telling a story of hope, fulfillment and community. They do so for good reason.

All too often, the words offered to pregnant women and their partners when the subject of screening for Down’s syndrome comes up, are words that close down. Words that shut out possibilities. Words that paint a bleak picture. Words that may offer sympathy but that do not offer hope. There is no power in pity.

It’s time this changed. We know the reality. You see we have a passion for the subject. And we can tell these parents a different story. We can use words that can unlock their dreams and their hopes and their plans again. We have the words that can dispel the myths, whilst being able to acknowledge their fears; we were in their shoes once too. We have the words to give them confidence. The words to affirm them as parents who will be able to love and cherish their child regardless of an extra chromosome. We have the words to show them that their child is not going to be defined by a list of medical issues or learning disabilities. We can bring words to life. Real life. Their lives.

We want these parents to be given the opportunity to talk with or learn from families who are living lives that include Down’s syndrome. Living lives not of medical reference but of poetry that reflect the highs and the lows of bringing up a child with Down’s syndrome. We want to be able to unlock a subject they may know little about and invite them to discover for themselves the joy that is to be found in the life of a person with Down’s syndrome.

Poetry in motion. Lives well lived. 

Sadly, here in the U.K. there are no second chances for the 90 percent of babies who are detected as having Down’s syndrome in the womb. Their prospect of life is brought to an end. Discriminated against before they even draw breath.

We need to get this right. Words need to change and the voices of those who know must be heard – especially at that most critical time of screening and diagnosis in pregnancy.

Mary Oliver is famous for many words, but perhaps, most poignantly, she asked the question,

“What is it you plan to do with your one wild and precious life?”

It’s not the only question that deserves a careful answer.

 

For more information on Down’s syndrome from people who really know please check out these great resources:

Positive About Down Syndrome

Down’s Syndrome Research Foundation

Wouldn’t Change a Thing

Down’s Syndrome Association

Lose the Label