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 It was absolutely not their experience and it appeared outdated, a backward step even.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

After one of the wettest summer months on record, the last thing you’d think I’d be doing is praying for rain. And yet, at 7am on Tuesday morning, as I looked out of the window and up at a dark, heavy cloud, that’s what I did. I prayed for rain.

Thirty minutes later and no rain.

Instead,  I got a text message from my eldest child’s infant school, happily declaring “Sports Day Is On!” And with that, the day ahead loomed larger and heavier in my mind than all the clouds put together.

It’s fair to say I’m not a fan of sports day. Putting aside my own childhood loathing of this school tradition, I now have another reason to dislike it. Fear it even.

My eldest daughter has Hypermobility. A condition that affects her in numerous ways – most of which are not immediately obvious. Poor muscle tone and weak joints combine to make every day, ordinary activities, that much harder for her. From climbing stairs to doing up a zip or a button, there are myriad ways in which she struggles.

And, top of the list of everyday and ordinary is PE. Sports. Physical activity.

Her first Sports Day she missed due to Chicken pox. Then, last year, she spent weeks worrying about it. Though, to be fair, her teachers were fantastic. Lots of support, practice and encouragement in advance of the day. And, somehow, despite coming last in every race she managed to end up on the winning team.

“It’s not about winning, it’s about taking part,” was the school mantra.

This year was different. And although she didn’t spend weeks worrying about it, I did. A week to go and I was checking the forecast daily, ever hopeful that the day would be thwarted by the British weather. Cancelled. I could then relax knowing that neither she nor I would have to go through the trauma.

“It’s not about winning, it’s about taking part”.

No. I don’t believe that either.

Too painful. Too difficult. Too risky. It’s not for me. It’s not for her.

Delete. Get rid. Don’t bother.

Had my prayer been answered, I would have unwittingly missed out on one of the best days of her school life!

First came the hurdles; small plastic tubes barely raised above the ground.

She got to the other end. She didn’t fall. She was smiling. Phew.

Then the sprint.

“It’s not about winning, it’s about taking part.”

Last.

And so it went on.

Last, last, oh, ok last.

Everyone cheered and clapped.

It doesn’t matter. It’s about taking part.

Lies.

Not that I needed her to win a race. I just didn’t want her to be last each time. I could tell her again and again that it doesn’t matter, but as she is the one who consistently sees everyone else from behind then it matters. Whether they are running a race, climbing a climbing frame or riding a bike or scooter. It is soul destroying to be the one that can’t.

Egg and spoon race.

“I’m good at the egg and spoon race,” she told me at breakfast.

“That’s good,” I said. I didn’t believe her.

She only went and won it…joint first with another child.

Hoo blinkin’ ray!

I felt a spot of rain. Great! Let’s stop now. Finish on a high. Quit while we are ahead.

“And now the sack race!” The Head Teacher announced.

M’s nemesis.

She clambered inside the sack. An achievement in itself; she couldn’t do that by herself a year ago.

Ready, steady, go.

M lurched forward and so did my stomach. Children pinging up and down; none of them particularly co-ordinated, but all of them way ahead. She got further than I dared hope but then I saw the look on her face.

A look of worry, panic. Close to tears.

 Parents and children alike willed her on. I am grateful for them.

A teacher stepped in and came alongside her. Then another.

And, in a moment, her biggest fear became her greatest joy.

 They scooped her up, still in sack, and bounced her over the finish line. The widest smile on her face I think I’ve ever seen.

It’s not about winning it’s about taking part.

Oh I see. Yes.

When others come alongside us in our struggles life is so much easier to bear. Joyful even.

There was more. A toddler race followed and younger sister Hazel took part from the comfort of her wheelchair. She took part. She enjoyed it. She was part of a community. She was included.

And to think I could have missed it all if I’d had my way. If my fears had been allowed to cancel Sports Day.

What. An. Idiot.

And, strangely, I am taken back to that April afternoon, 5 years ago, when a Doctor told me my unborn baby might have Down’s syndrome or may even die.

I remember the fear. Fear of the unknown. All I saw was difficulty and trouble. Risk. Pain.

To be avoided. Cancel this baby. Let’s not go there.

Only fear.

No one told me how much this child would enrich my life. How much beauty she would bring. How much laughter, smiles and joy.

I knew nothing of the joy.

Risk. They called her a risk.

I call her a joy.

I didn’t cancel the baby. I wasn’t strong or courageous. I was frightened. Afraid.

But it was the best decision I have ever made.

So to the expectant woman perhaps reading this who has had ‘the test’ and has been told her baby may have Down’s; I get it. I understand how you feel. I understand the fears you may have. I felt that way myself. But if there’s one thing I could change about the way you’ve been told the news it would be to remove that word ‘risk‘ and replace it with ‘joy’.

 There is, it seems, no test for joy. Only risk.

Some fears are definitely worth facing, some risks worth taking.

 

Miriam sack race downright joy

 

 


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Voices

So many voices just now.

Voices of reason.

Voices of hate.

Voices of sound arguments.

Voices of the implausible.

Voices that are angry.

Voices that are incredulous.

Voices that are disappointed.

Voices that are elated.

Voices that are fearful.

Voices telling lies.

Voices telling truth.

Voices twisting truth.

Voices that are scared.

Voices that are triumphant.

Voices that are evil, hate filled, stirring up violence.

Voices that are compassionate.

Voices that give hope.

Voices that speak against injustice.

Voices of the classes. The rich, affluent, well off, comfortable voices.

Voicing.

Voices of the poor; the poorest in society.

Needing to find a way to even use their voice at all. Their views are so rarely sought; they fail to meet the requirements for an educated debate. Their opinion does not count. It is uninformed. It is uneducated. It is unworthy.  It must not be allowed to have influence unless it first becomes those things. It’s too risky. Too flawed.

I think I may have heard this sentiment elsewhere and it makes me uncomfortable.

I recognise my past failure to listen to this kind of voice. I have ignored their cries. Ignored their anger. Silenced their voices. I am not a champion for the poor. I do not claim to know what their lives are really like. But I have judged them and, at times, hoped they would not impact my life too much. I don’t like mess.

And some voices are never heard.

They are silent.

Unable to speak.

Deemed unworthy of a voice at all. They don’t reach the standard of the informed or educated.

They are seen as a “risk“. A problem. Too costly. Too flawed.

In the UK around 90% of babies prenatally diagnosed with Down’s syndrome are never given a voice. Their voices are silenced. Even those that are given a voice may then go onto face ignorance and discrimination. Their voices are ignored. Deemed irrelevant.  “Backward” or worse, “retarded”. Never amounting to much.

I cannot ignore their cries. I cannot stand by as their voices are silenced.

My own little “risk” is nearly five years old. She has not yet truly found her voice. And yet she speaks more loudly, more beautifully, more lovingly and more joyfully than any other voice I have heard. She speaks into my life and the lives of those she meets. Costly? Hugely so, but a price worth paying a thousand times and more. She gives back far more than she ever takes.

Prejudice and intolerance come in many forms and I am not immune from their guises.

Voices need to be given to those who have none. However costly. However risky.

And the risk may be overwhelmingly worth it for all.

Listen for the voices we cannot hear. Voices of those who are actually more alike than different.

So I say this firstly to myself for I am guilty of so much that has not helped others: Shout louder than the voices filled with hate. Listen to the voices who are disappointed, fearful and hurting. Whatever their background, wherever they are coming from. Offer hope not judgement.

“Love must be sincere. Hate what is evil; cling to what is good.”


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Turn Back The Clock

 

May is nearly upon us and, for me, this means one of my favourite things. Chelsea. Not the football club but the Flower show. Not that I’ve ever been. I’d love to, of course, but the demands of caring for a young family with additional needs prevents trips like that at the moment. One day I will go. One day.

For now, I’ll settle for a week or so of high definition images via the BBC and Mr Titchmarsh & Co.  Pure indulgence. A week of dreaming that my humble little back garden will somehow also be transformed into a panoply of perennials, a cornucopia of chrysanthemums and cordylines.

It never is.

I have dandelions growing in my conservatory roof.

I’ve yet to hear or see the humble dandelion get a mention at Chelsea. I’m not sure they’ve ever even heard of one.  After all, it’s a weed. Not wanted. No place for it. It would spoil the garden. Ruin it, even.

The dandelion is hated. People wage war against it, so much so we spend millions of pounds on products aimed at destroying it.

The dandelion will grow anywhere. Except where it has been eradicated.

Yet the dandelion is also loved. Childhood games spent telling the time with a dandelion clock. So perfectly formed, so intricate, so gentle and so beautiful to look at. Then, as the seeds are blown, delightfully, by a childish puffing of cheeks, they are carried effortlessly away on the breeze. Landing somehow, somewhere and there, they begin to make their own mark in the world. A world that doesn’t really want them. Wishes they weren’t there. Will do all in its power to eradicate them.

When do these same children learn to hate something they once cherished? When does fear replace this childlike acceptance?

I don’t know the answer but somewhere along the road it happens.

Fear.

And so it is with having a child who has an extra chromosome.

Fearful.

At least it was for me, and, given the statistics on how many terminations take place in the UK following a diagnosis of Down’s,  I think it is fairly reasonable to make the assumption that fear has a huge part to play for many who find themselves in the same position as I did.

I was afraid of the dandelion.

I was afraid of how it would spoil my garden. Take over. Damage. Ruin its perfect appearance. Make gardening harder.

Of course, my garden was never perfect, but I strived to make it so. I could not let the dandelion spoil this dream.

I was affronted by this ‘intruder’. I believed the lie. That the dandelion was harmful. That the dandelion was ugly. That the dandelion had no place in my garden.

But I could not eradicate it even though I was told it was possible. Easily arranged. For the best.

And, I am forever thankful, that my fears although real, were never strong enough to take hold of the situation. They were never allowed to go to the garden centre and buy the weed killer. Though, for a while, I am ashamed to admit, I envied those who could.

I began to love the dandelion. I began to cherish its beauty.

And, over time, the shame I had wrongly felt at having a garden with dandelions was replaced by a sense of awe and wonder at this beautiful plant. I discovered its beauty, its benefits and its immense joy. I love how it pops up anywhere, it’s deep vibrant yellow flower forcing its way through the most hardened of soils and singing in the sunlight. Enjoying life. Enjoying being there. Dandelion experts even tell of the health benefits it can bring. Who knew?!

The dandelion is not supposed to be here. Or so you would think.

I wish I could turn back the clock and re frame the dandelion.

It deserves it.

The dandelion makes me smile.

050


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Limping

Afraid. What does the future hold? Will my children be safe?

These are questions I’ve noticed many parents are asking on social media lately. So much to be afraid of.  Acts of terror creep ever closer to home. Paris. Long awaited trips to Disneyland being viewed rather more anxiously. Life just got a whole lot more scary.

Fears.

And yet for the parent of a child with additional needs these fears are already known only too well. They have loomed large since the day they were given a diagnosis.

Afraid. What does the future hold? Will my child be safe?

Like me, they stare over their sleeping child and ponder these things. Watching them breathing deeply and securely in their cot or bed. Smiling at the way they are lying or the way they are clutching onto a favourite blanket or teddy. Thoughts so quickly turn to the future.

Who will take care of her when I am gone?

Will anyone love her – really love her as I do, when I’m gone?

Will she be bullied because she is different? Because she has Down’s syndrome?

Will she be exploited? Taken advantage of?

Who will speak kindly to her when she is anxious or sad?

Who will hold her hand or give her a hug?

It’s not uncommon for many parents of children with disabilities to even wish that they outlive their child. They cannot see a future for their child without them being there to care for them.

It’s these fears that threaten to overwhelm me. Blink fast, swallow hard fears.

But they only ever threaten me.

I’m a Christian. Completely not cool.

According to the media and especially social media, I am someone to be mocked. Often laughed at, ridiculed, criticised and increasingly silenced.

I can live with that.

I can live with that because my faith is the only thing that can calm these overwhelming fears. The media can’t. Facebook can’t, neither can Twitter. Other people can’t, though of course I take huge comfort and encouragement in the words and experiences of others on a similar journey, whether or not they share my faith. I am thankful for them and value them enormously.

But, if having faith is a crutch to lean on then I am happy to keep limping. However uncool it may be.

The Bible has two particular things to say about Hazel ‘s life. They are my crutches. Whenever those fears threaten to overwhelm me once more I bring them to mind and lean heavily on them.

Firstly that God uses the weak things of this world to shame the strong.

Hazel is weak, undoubtedly.

Down’s syndrome is often seen as weakness. A flaw. Something undesirable. Something to be got rid of. Unwanted.

Not to God. And not to me. I have already seen how Hazel’s ‘weak’ life compares to the selfish, self centred lives of many ‘stronger’ or ‘wiser’ people. She has already brought more joy into our lives in four short years than some people will bring in a lifetime. She shames many. Each and every day.

Secondly, that God has plans for her life. Plans to prosper her and not to harm her.

Hazel’s life is no accident. She was planned. She has purpose. She has a future.

This doesn’t mean there won’t be problems, or challenges. This doesn’t mean she won’t face discrimination or even hate. But it does mean that her life will matter. Her life will make a difference. Her life will be cherished and she will be loved. I believe what God says. I have to. The alternative is too overwhelming for me.

I will keep limping.

Holding tightly onto my faith.

Stamping out those fears as I go.