Downright Joy

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


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Songbird

bird in cage

I know why the caged bird sings is a book that profoundly moved me when I first read it years ago. The author, Maya Angelou, vividly recounts her childhood against a backdrop of racism, discrimination and poverty.  A book filled with moments of joyous discovery weaved into and through a history lesson on brutality.

I’ve been re-reading it again recently.  I say recently, but it’s taken me over a year and I still haven’t finished. Not for want of trying – I’ve quite an impressive stack of literature next to my bed; but for the fact that the moment my head hits the pillow I’m gone.

As a parent and carer to two children with a range of both complex medical needs and disabilities between them; Autism, Down’s syndrome, Dyspraxia (let’s just say the list of conditions at the top of our hospital letters takes up most of the page) – reading for leisure, in fact most kinds of leisure tend to take a back seat. Sleep is more of a priority as it can often be in short supply. Tube feeding my child every night tends to cut across most socially acceptable leisure pursuits at the best of times.

(She’s worth it of course, of that I have no doubts. They both are).

Therefore, a trip to the hairdressers every eight or nine weeks or so is something I guard jealously. A self-indulgent hour and a half that serves also as an opportunity to read.

Maya Angelou comes with me. She sits beside me in the salon. She laughs in the mirror and tells me her tales. That laugh. From her belly. Gets me every time.

My hairdresser is too polite to mention that I am still reading the same book as last time, and the time before and the time before that.

Last week, chapter twenty five was waiting for me. Three quarters of the way through. I looked forward to Friday and my appointment.

Chapter twenty five is still waiting for me. Like everyone else in the nation, no, the world pretty much….a haircut now has to wait. Appointment cancelled. Salon closed. It’s on hold.

Everything is on hold. In some way and to some degree.

And, for families like mine, it’s vital support systems that have been put on hold. Systems we have fought for, prayed for, cried for, pleaded for. Systems we have celebrated gaining access to: education, healthcare, social activities for the disabled, respite for carers and much more. Support systems gifted to us by the kindness and dedication of numerous volunteers. Families, like mine, suddenly find themselves without these vital networks. More than that, they watch in disbelief as people panic buy medical supplies such as gloves and clinical wipes – items we rely on for daily life, regardless of a pandemic, are now in short supply. Respite centres close, lifelines are cut off. And though the world moves online; excellent programmes and meetings are created and made available to those who now have lots of time on their hands, these are much less accessible to families like mine. These families wonder how on earth they will cope. I wonder that too.

Then I remember Maya.

I remember thankfulness. I remember beauty in hard places. I remember to live one day at a time. I remember to not worry about tomorrow for tomorrow will have enough worries of its own.

I look at my daughter who has Down’s syndrome. She is non-verbal,  yet she tells me all I need to hear, loud and clear.

She tells me that there is joy to be found in the waiting, in the confusion and in the uncertainty. In the now.

She loves her life. Her school, the farm she visits, the lambs she strokes, her home, the park, the shops, her beads and ribbons, Granny & Grandad’s house….

She has no idea why she cannot go much beyond her back garden at the moment. She is confused. Sometimes she is upset. Yet she searches out joy and brings it to me in some small, gigantic way every day. Today it was in a belly laugh. A bit like Maya’s. From deep within yet at what? I have no idea.

Hardship is, well, hard, yet it does not have to be devoid of joy.

Our lives are not really on hold, even on the hardest of days when there is no respite to be found. Even then, I have found there are always reasons to be thankful, always opportunities for joy.  My daughter with Down’s syndrome eloquently tells me so.

And I remember Maya. And I think I might know, a least a little bit, why the caged bird sings.

 

And Still I Rise – Maya Angelou

Maya Angelou

 


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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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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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Close Up

raindrops

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

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

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

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

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

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

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

I hear her.

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

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

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

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

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

A lens that sees everything and nothing.

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

H & leaf

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


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Funny that.

Laughing boy

Did you wake up laughing today?

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

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

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

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

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

Just like you, just like me.

A range of emotions.

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

Unlike you, unlike me.

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

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

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

My daughter woke up laughing.

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

Funny that.

 

 


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Tango

I read a remarkable story recently that a friend shared with me, about a group of dancers in Buenos Aires who were learning to dance the tango. Nothing unusual there; the tango being synonymous with Argentina of course. These dancers, however, took far longer than most to learn such an exotic and complicated dance; up to ten years as opposed to a more usual single year. These dancers had Down’s syndrome.  A remarkable story of determination, patience and perseverance that led some of those dancers (or artists as their instructor rightly prefers to call them) performing to audiences across Argentina and literally moving them to tears.

Yet it was not their achievements that stood out for me, remarkable though they were. No. It seems there was another reason why it took so much longer for the group to learn the intricacies of the dance compared to most. A reason that had nothing to do with any physical limitation or impairment.

Simply, whenever the music stopped the dancers would seize the opportunity to move around each other, chatting, hugging and generally socialising with one another. So much so their instructors had quite a job refocusing them on the task in hand!

And that got me thinking.

How wonderful. How utterly refreshing and uplifting.

A group of people who love to communicate. With each other.

Learning the dance was important, very much so. But the friendships, the connections that were there to be made more so I imagine.

It is said that people with Down’s syndrome have difficulty communicating. Their speech maybe impaired or delayed or even non-existent perhaps.

Parents, educators, medical professionals all agree that Speech and Language provision is vital for a person with Down’s syndrome. And of course, it is. I don’t deny that for a moment.

And yet.

The more people I meet with Down’s syndrome, the more I am convinced that they are better communicators than the rest of us put together. They are not often constrained by convention or etiquette or old fashioned British stiff upper lip. They rarely look at the clock and feel pressured by time. They are free to be themselves. So they are.

I just don’t have the time is a phrase you will rarely hear from a person with Down’s syndrome. Yet it’s a phrase that many of us can be heard saying on a daily basis.

I need some ‘me time’ is another; in a world where we fight to carve out time for relaxation. So many of us under stress to breaking point.

Is it ‘me time’ that we really need? Is it more time even? Or is it that we no longer make time for one another.

Perhaps we would do well to look at the lives of the very people society has so often shunned; people with Down’s syndrome. To look at people deemed to have communication difficulties and learn from them. Allow them to teach us, not the other way round. Allow them to show us how to come together in the midst of what we strive for and listen to each other, talk with each other, make time for each other.  Show us how to truly communicate with each other through whatever means we have.

However long it takes.


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Truth be told…

Words people said when my first baby was born:

Congratulations!

She’s beautiful

She’s got your eyes

So cute

Adorable

Aaaahhhh

So happy for you

So many wonderful adventures ahead of you

Welcome to the world little one

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

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

Precisely what I needed to hear, truth be told.

Just what the doctor ordered.

 

Words people said when my second baby was born:

I’m so sorry

 

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

Just what the doctor ordered.

But his prescription is long since out of date.

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

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

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

 

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

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

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

Each one profoundly beautiful.

Truth be told.