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 It was absolutely not their experience and it appeared outdated, a backward step even.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

Pets.

I’m not a fan of them, as those who know me well will testify.

Brief forays into rabbit or guinea pig ownership as a child were enough to convince me that pets were not for me. A fear of dogs from an early age led to a general avoidance of all things four legged, furry or winged.

They’re just saying hello are words that, quite frankly, make me cross. Leave me alone. I won’t annoy you, so please don’t annoy me…. has generally been my motto around other people’s beloved pets, with one or two exceptions.

But I am fascinated by the adoration and reverence afforded to our nations pet animals. Cats, dogs, hamsters, rabbits, guinea pigs, stick insects and the like.

Why? Why do people go to so much expense, time and effort for these creatures? Surely their life would be easier without them? Just think of the vets bills. And what about the commitment? The lack of freedom when you’ve always got to find someone to feed the fish or put the cat out when you are away? Or the expense of a cattery or kennels or as is most fashionable these days a pet/ house sitter. And then there’s the poo. I’ll stop there.

I don’t get it. But I do accept it.

I have no right to criticise people who are pet owners. They know the costs but they think more of the humanity of owning a pet. The benefits. The joys. All that owning that pet will bring to their lives and the life of their pet. They are not selfish people.

They get it, I don’t.

I do, however, get the desire to care for, love, receive and give affection to another. The humanity of caring, nurturing, treasuring and enjoying another being.

Consider the humble tortoise.

Once freely available and cruelly imported to this country before the law was tightened and permits for keeping them were introduced.  For humane reasons.

Tortoises make great pets according to some. They sleep for months on end, don’t need to be taken for a walk and children adore them. Oh and they happen to live for decades. They may even outlive their owners! A fact that clearly hasn’t put off the increasing number of people who now keep tortoises as pets.

According to a recent article in The Telegraph, we as a nation (UK) spent a whopping £6 billion on our pets last year. Heartless animal avoiders like me might argue that this money would better spent elsewhere. On the NHS, for example, or in our schools.

But whilst I may not understand the nation’s pet obsession, I will not criticise it. Nor will I say that this is a cost than can be avoided…“if only pet owners would stop being so selfish and think how better that money could be spent.

Yet…. these are attitudes that families of people with Down’s syndrome come across frequently, especially in the media. Worse still, expectant parents are faced with an ever increasing pressure for their unborn to be screened for the condition with the rolling out of a new pre natal screening test – known as NIPT. (Non Invasive Prenatal Test).

Why?

It’s so expensive to care for a child with Down’s syndrome.

They are a burden on society.

Well, who’s going to care for them when you’re too old?

They will outlive you. How do you feel about that?

Society is better off without them.

It’s selfish to knowingly bring a child with the condition into the world.

It’s not fair on the siblings.

Your relationship will suffer.

These are, shockingly, all real opinions that have been put to families like mine all too frequently. Not only to us but also to parents who, after hearing them from various sources, decide they can’t go through with a pregnancy that has been declared defective by the detection of an extra chromosome.

My question is this. If, as a nation we can pride ourselves on our passion for pets and place high value on their humane treatment and care – however long they live, why can’t we do that for people like Hazel? For those yet to be born?

Consider the humble tortoise. Mistreated and now, thankfully, protected. Cherished even.

Why, if we consider ourselves a humane society, is protection seemingly too much to ask for those with an extra chromosome? We appear to have forgotten the definition of this powerful six letter word.

humane
hjʊˈmeɪn/
adjective
  1. 1.
    having or showing compassion or benevolence.
    “regulations ensuring the humane treatment of animals”
    synonyms: compassionatekindkindlykind-heartedconsiderateunderstandingsympathetictolerant, civilized, goodgood-naturedgentle;

    lenientforbearingforgivingmercifulmildtenderclementbenignhumanitarianbenevolentcharitablegenerousmagnanimous;
    approachableaccessible;
    rarebenignant
    “regulations ensuring the humane treatment of animals”


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Duck Life

Swimming pools are my worst nightmare. Public ones anyway. A cacophony of shrieks, shouts and screams. An echoing sensory overload nightmare for one of my children and a place of mainly slips, trips and falls for the other. Never a relaxing experience, usually one that ends in tears.

So our recent mini break was made all the more relaxing by the addition of, no, not a private pool, but the next best thing. A hot tub.

The girls loved it. Hazel learnt to hold on to the sides and step round it – this is a major achievement for someone who can barely stand, let alone go anywhere on her feet. M loved it too. Playing imaginary games with her mermaid dolls and plastic, grubby looking yellow ducks or inventing silly games. Admittedly, neither did much swimming, though M tried, achieving her width certificate in record time. Great fun. Until…

Two little ducks went out one day, over the hills and far away…..

You know the rest.

Quack Quack Quack.

Only one came back. Literally. When our backs were turned, the more adventurous of the two little plastic ducks went…

Over the edge.

 And into an abyss. Well, into the gap between the hot tub and the log cabin. But it may as well have been an abyss. Dark. Deep. Impenetrable. No way back.

Gone.

Tears. Of course. I empathised. I may have even cried some too – for good measure. To show I felt her pain. Ducky had gone and so we grieved.

Mummy you have to get it back.

Sorry, sweetheart. That’s impossible. She’s gone.

Daddy. You have to.

We’ll get another one. I promise her. It will be better. It won’t be grubby looking. New. Shiny. Perfect. She’ll soon forget about it. Move on. Life’s losses and all that.

It’s only a toy duck for duck’s sake. It’s not important. We can sort this.

Even now, I still underestimate my daughter’s powers of persuasion.

24 hours of intense protest and ducky has come swimming back. Nothing short of a miracle I might add. My husband going beyond the pale to reach down/under/bent double/contortionist style all for the sake of a sorry looking yellow duck.

Sometimes we forget what matters.

We dismiss. We minimise. We play down the value of others.

We think about ourselves a little too much. Or perhaps, too little. We underestimate what we are capable of doing, when push comes to shove. We don’t feel up to the task. We avoid difficulty and pain, sometimes selfishly, other times because we too, feel unworthy, unloved. Afraid.

We tell ourselves our comfort is paramount. Our lives are too short to spend on something that is too difficult or not important. Less than. Worth less. Worthless.

M didn’t. To her, that little duck meant the world. The thought of leaving it behind, saying goodbye, replacing it (as if!) not valuing it, well, that was beyond her reasoning.

Caring is what she knows. It’s inherent in her. And I love that she is wired to care.

Caring for people that the world tells us are worthless.  We can deal with that, they say. At both ends of life, start and finish. Get rid. Move one. Get another one. It will be better than this one. Burdensome. Forget about it. It’s kinder that way. Best for everyone.

Except the duck. Whoever that ‘duck’ may be. An unwanted foetus, an elderly person with dementia or suffering with some other incurable disease, a disabled person, a lonely person. And, for the record, I’m not calling anyone a duck as such.  Though I happen to think ducks are very wonderful creatures! That’s simply the toy she was playing with….M would have felt the same way had it been the mermaid that had disappeared. She does not discriminate between mermaids and ducks, they are equally loved.

I am thankful that my 6 year old is not as quick as I am to give up.

I live in hope that she and many others of her generation will want to explore – really explore – what caring for others should look like. They won’t simply accept the idea that because technology allows us to do something, we should. That just because we have a right we should use it.  Rights are fought for – hard won battles to supposedly allow freedom of choice and dignity. Yet I often wonder what society would look like if we focused less on our rights and more on our responsibilities to each other. Maybe those same ‘rights’ wouldn’t even be needed, if we truly cared about each other’s welfare.

And M, at just 6 years old, gives me hope that she will always be willing to go the extra mile for whoever needs it and not just look for the ‘undo’ button. Perhaps she will look for ways to rescue, help and care for those in trouble. She will look for solutions. She will want to care. Want to rescue. Want to love. Want to speak life over others. She’s already doing it, and, according to her teachers, it’s not just with ducks.

Her persistence sometimes drives me to distraction.

I thank God that it does.