Downright Joy

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


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Cost of Loving

Photo by Pedro Kümmel on Unsplash

The barriers have been going up lately at an alarming rate. As we move into a new stage of life with my daughter who has Down’s syndrome, so her needs have increased whilst the help she needs is held back.

I’ve wondered at times if the joy I’ve written about here would follow us through the years, or would harsher new realities emerge to crush it? Am I a fraud, claiming Downright Joy when faced with increasing barriers surrounding care needs as well as a few more challenging behaviours? Then there are days of staring into the unknown of what if’s and how will we cope’s of her future? Those are bad days, where joy is elusive.

Authorities are increasingly, or so it seems, putting more and more hurdles in our way to jump over. Not just authorities, but every-day life sets out its barriers at the start of each day. Road blocks all around us, forcing us to divert, often at the last minute. Satellite navigation voices sounding more and more urgent telling us to turn back, we’ve missed our opportunity. Find another route.

Is this what they meant, eleven years ago, by referring to her as a burden?

And yet I don’t recall them mentioning these things back then. In the sonographers room we were quickly told what she probably wouldn’t be able to do. No one told us about the things she wouldn’t be able to have.

Yet, after she was born I quickly learnt that the doing wasn’t all that important after all. We all do things differently anyway because we are all different. But the having is a different matter because we all have needs, even if those needs vary.

So why did they not tell me about the things she wouldn’t be able to have as opposed to the things she wouldn’t be able to do?

Was it because that would shine a very uncomfortable spotlight on us? On society, on Government policies, on community and on our own value systems? A spotlight on lack of resources as well as unwillingness to pay the price of putting others needs before our own.  It’s an uncomfortable conversation very few are willing to have.

Sacrifice.  Sacrifice is an ugly, painful word to many.

A word often now devoid of its sacredness.

No. Instead they focused on her. On her extra Chromosome. She’s the one with the problem. Not them, not us.  And if she were to make it past the 3rd trimester then she would still be the one with the problem. Not them, not us.

They made sure I knew this before I turned down their final solution. But they did not tell me everything.

They did not tell me that there will be so many things she can’t have “because we won’t allow it.”

At birth, she’ll be given a different Red Book to every other baby on the ward. Because she’s different.

They did not tell me this.

As she grows up, the clothes we sell on the High Street won’t fit her, she is the wrong shape. The shoes we sell will not support her mis-shapen feet. But we’ll provide her with a pair that do fit; however we’ll repeatedly let you know just how expensive they are. Please do not ask us for a new pair until these have completely worn out, useless and are falling apart.

They did not tell me this.

Oh and she won’t be able to use the same toilet facilities we do because they will not meet her needs. Please do not ask for ones that do. They are far too much money. You’ll have to lie her on a filthy floor instead. Better still, don’t go anywhere, stay at home instead.

They did not tell me this.

Her school will be different. Good but different. She will be hidden away there from her community but still cared for and loved there by those who know her worth.

I already knew this and it gave me hope. There are good people in our communities and especially in our schools.  We need them so much.

She can join in the very limited activities that we will pay other good people to provide, but you will have to attend countless meetings, fill out numerous forms and open your life to intense personal and painful scrutiny in order to access the funding we have set aside (under lock and key) for people like her.

They did not tell me this either.

There will be so many more experiences she cannot have, but not because she cannot do. And when, eventually, she leaves school, the opportunities for her to be part of her local community in a meaningful way will probably dry up to virtually nothing.

They did not tell me this. But others who are further along this road than me are already signalling what (doesn’t) lie ahead.

Doing things differently should never be a barrier to being part of a community. Love can always find a way, but love has to be an action not just a feeling. Love is a commitment. Love is hard work. Love is sacrificial.

The cost of living crisis began a very long time ago, but many did not notice.

What is spoken over the unborn with Down’s syndrome is a discourse agreed long before their parent(s) set foot in the clinic. An unspoken discourse….

All things considered, we’d rather you didn’t come in. Don’t take it personally though. No, no, see it as a kindness! To you, to your parents and to the rest of society. The intelligent, sensible thing to do. We really can’t afford to be quite THAT welcoming. Look, we’ve even developed this great new test which will help matters enormously. Routinely even; It’s no big deal, really. It’s for the best.

Diversity? Yes of course we like diversity. But only the diversity we like.

Obviously, we will leave the decision up to your parents. That’s the accepted thing to do. We won’t tell them what you can’t have in your life, just what we think you can’t do in your life. Make it a matter of personal choice, thus absolving us of our collective responsibility. 

They can be the ones to take the blame; your parents. Not us.

Either way. 

Either way you lose

When the cost of living is deemed of higher value than the cost of loving we all lose. To diminish one of us is to diminish us all. I now see exactly where the burden comes from, and it isn’t from my daughter who has Down’s syndrome.

I am glad that they didn’t tell me these things; even if they knew of them. Telling me what she would not do was enough of a barrier to overcome. A prediction based on a value system I do not share.

It seems to me that we’ve got this idea of scrutiny entirely the wrong way round.

We are scrutinising the wrong thing. Instead, the camera, the tests, should be focused on the scrutinisers, on our society, on us. Searching our genetic make-up, and finding out how and what went wrong? When did we allow these anomalies to creep in?  When did we become a society that is so focused on perfection, on achievement and success, so focused on ourselves? When did we forget that in order to truly live, we need first to love.

Downright Joy is found in the daily sacrifice.

It’s in the harshest of environments. It is breathtakingly humbling, eye-wateringly costly, yet remains the greatest privilege and honour of my life to receive. 

They won’t tell you that, but I will.


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Lemons and Pomegranates

I recently took time out from caring for my disabled child who has Down’s syndrome and took a trip to Italy to visit family I had not seen for a very long time.

It was also an opportunity to spend more time with my eldest child, and introduce her to a whole new cultural experience as well as meet some of our family for the first time. For one entire, exhilarating week, we wandered the cobbled streets of Sorrento, savouring the sights and the sounds of this beautiful coastal town in the Bay of Naples. 

Lemon trees lined our pathways, Orange trees also. In the narrow back streets, shops and bars jostled for space and competed for customers, their baskets filled with ruby red pomegranates and lemons the size of grapefruits. Leather goods spilled out of doorways giving off an intoxicating air of ‘We are Quality and we know it.

Sorrento, according to Greek mythology, was home to Sirens, who lured sailors onto its rocks with their mesmerising songs. Today, tourists and locals alike gather above those rocks, lured not by song but by sunsets. A place to stand and pause, capturing a memory or two against the vibrant colours of blue, fiery reds, orange and deepest yellow hues that fill the skies.

A short train ride along the coast finds the ancient city of Pompeii and its neighbour Herculaneum. In AD 79, a cataclysmic eruption of Mount Vesuvius, known to locals as His Majesty, destroyed the lives of over 16000 inhabitants and the livelihoods of those fortunate enough to escape the suffocating clouds of ash or the pyroclastic flow.  Wandering through Pompeii’s ruins, our local tour guide brought this legendary city to life as she told us stories of some of the people who once lived and worked here. The rich, the poor, the everyday and ordinary lives and their extraordinary blueprints for so much that we know and use today. Who knew, for example that house builders in Roman Pompeii knew the design for LEGO centuries before LEGO did? Our guide told us much of what she knew; human stories of human lives, achievements, hardships, joys and sorrows. Baking bread, shopping for clothes, going to the theatre, gossiping in the town square. Every day life of men, women and children, living and thriving in community.

‘Lego’ type design found on building blocks in Pompeii

One of the most remarkable outcomes, at least to me, of the story of the Volcanic eruption in AD79 is how the surrounding area eventually recovered from this catastrophe. The whole region is famed for its produce. Olive groves aplenty, vineyards, oranges, lemons and much more are to be found on the slopes of Vesuvius in abundance. And, according to historians and geologists, the land became far more fertile as a result of the eruption. The economy recovered relatively quickly and future generations enjoyed the spoils from the enhanced rich soil. They thrived. His Majesty Vesuvius brought life as well as death.

When my daughter, who has Down’s syndrome, was born I was given a poem. The poem was about a planned holiday to Italy being diverted in the air and landing in Holland instead. This poem is well known in the Down’s syndrome community and is a bit like marmite in the way it divides opinion. Personally, I found it to be well meaning, but deeply disappointing. No offence to the Dutch; I’d love to visit their country too one day. But I will not allow anyone to steal Italy from my heart or my dreams.  Having a child with Down’s syndrome is not a diversion or even a different destination; who knows where any of us will end up in life after all? Neither is it a catastrophe as some think or express.

What happened in Pompeii was a catastrophe. Having a child with a disability is not.

I do not minimise the challenges that come with bringing up a child with Down’s syndrome. I never have, I hope. The opposite in fact. I have no desire to ‘lure’ any parent faced with the news that their baby might have a disability into a false sense of security, when the journey is clearly fraught with, at times, hard, rocky places. But modern day Sirens still go off where disability or, in particular, a diagnosis of Down’s syndrome is concerned; bringing fear, panic and urgency in decision making. They need always to be tempered, in my opinion, with a softer, sweeter song. A song not of falsities or deception, but of hope. There is still life to be had, to be lived, to be enjoyed. And in many ways it is a life more vibrant and verdant than before.

I do wish that my daughter’s life, and the lives of others born or unborn with disabilities are seen first and foremost as the humans that they are. Perhaps, if they were, there would be no need for a Down’s syndrome community or a disabled community.

Just a community would be enough. 

A community more welcoming, more supportive, more vibrant, more fertile, more prosperous and hope-filled for all its inhabitants, its humans, than ever existed before. Thriving.


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Honoured

Image: Hans Braxmeier (Pixabay)

A funny thing happened the other day…. I think I may have attended the Best Wedding Ever. Or at least, the Best Reception Ever. The actual Wedding took place two years ago but plans for a large celebration were scuppered by Covid. Thankfully, seasons change and the Bride and Groom could now be truly honoured by many more than were able to attend the original ceremony.

I’ve since been reflecting on why this celebration felt so special. Of course, all wedding celebrations are special, but this particular wedding celebration was like no other. For a start, the Bride and Groom had Down’s syndrome. How many weddings have you been to where that was the case?

It was more than a celebration. More than a just a party. A joy filled day and night of people with Down’s syndrome – and there were many – and people without Down’s syndrome, quite simply enjoying one another’s company and letting their hair down.  All the usual things you might expect to find at a wedding; colourful outfits, smart suits, table favours, speeches – including the best one I’ve ever heard from a Groom, cheesy wedding songs and disco lights…. Simple extravagance. Wedding-y.

Yet also quite profound.

Alongside those who were getting married, giving speeches or playing musical instruments, living their lives to the fullest, planning and dreaming of their own special day, was my daughter who also has Down’s syndrome. And though I do not possess a crystal ball, I am realistic enough to know that she is unlikely to realise those same dreams, even if she were able to dream them in the first place. She is far less able than many with Down’s syndrome. Yet, in that wedding reception I felt a sense of love and care towards her that I’ve rarely come across anywhere else outside our own community.  As she wandered around the tables of seated guests in her own autistic, non-verbal yet noisy world, present yet elsewhere; I sensed a belonging. No-one stared or looked away as they often do in these situations. They smiled. Not out of pity either, but out of love. They reached out to her without hesitation. They honoured her just as they honoured the other guests who had Down’s syndrome. We did not strive for inclusion. That was a natural given. And though I joked about ‘life goals’ when she inadvertently led the Conga from her wheelchair, it wasn’t a joke at all. Even the DJ said it was the best Conga he’d ever seen.  

At breakfast the next day, I saw very few hangovers, though we had all enjoyed plenty of wine.

Instead, I saw other guests who also had Down’s syndrome, excitedly talking about when it would be their turn. Their wedding day. Even if they hadn’t actually got a partner. They were now daring to dream the same dream.

This Wedding was not a celebration. It was an Honouring Ceremony.

A safe place to be. An honouring place to be. Where the least became first.

A day when people who have Down’s syndrome were truly honoured, not routinely mocked, feared, shunned or despised. Yet, within the space of just forty-eight hours, this realisation came home to me and my family with a brutal bang.

My eldest child, just 12 years old and a young carer to her sibling who has Down’s syndrome, soon found that the Wedding Bubble had burst. Saturday’s honouring of people with Down’s syndrome, people whom she loves, turned into Monday’s mocking of them.

A fellow classmate, in their impatience over tech that wasn’t functioning correctly, directed two words at my daughter. Forcefully.

‘That computer’s got Down syndrome,”

They said it twice. Once to her, then to an adult. For laughs.

Except my daughter didn’t laugh. She cried. She left the room in shock and missed the start of a test she had been about to take. The other child was taken aside, reprimanded and shown how their words could never be funny, only hurtful. Mercifully, restorative justice meant that heartfelt apologies were made and fully accepted. The child was genuinely contrite and, they felt bad.  

A lesson learned the hard way, yet there should always be room for a way back. Room for restoration.

Down’s syndrome.

A child used those words. As a slur, or, at best, in what they thought was an acceptable joke. Words that were their first choice. A specific, identifiable condition. Down’s syndrome. Not Learning Disabled or another condition.  They targeted Down’s syndrome. And the irony of them having their own Learning Difficulty made that all the more distressing.  How does a twelve year old learn to say such a thing? To target a group of people so thoughtlessly, or so heartlessly? For laughs. I can only think it is because they had heard it before. Likely many times. Something like this….

Down’s syndrome = equals stupid.

Down’s syndrome = worthless.

Or, perhaps more likely in this instance….

Down’s syndrome = funny.

A familiar portrayal that’s been on run and repeat for as long as I can remember.

And so, in response, I do the one thing I can do to alter this course.

I honour my precious Down’s syndrome child. And, before the entire community points out my language (or apostrophe use – hey I’m in the UK, it’s what we do), I used the words exactly how I meant them. My precious Down’s syndrome child. My precious child with Down’s syndrome. One and the same. Mine. Precious.

It is my honour to honour her. To serve her. To get on my knees when she needs me to. To set aside the things I might like to do so that I can be there for her, with her, alongside her or right behind her. Never in some kind of martyrdom, simply a response to what caring for another really is. A privilege.

To honour her because she exists, because she breathes, because she is.

I am all for honouring people with Down’s syndrome. Others have, and continue to set Down’s syndrome apart from the rest of society in brutal ways, both in word and deed. They do not honour people like my daughter or those at the Wedding. And as I doubt that achieving equality can ever balance the scales of this injustice, so I determine to set her apart and tip the scales in the opposite direction.

I will honour her. To honour is so much more than to celebrate. It is not dependent on any accomplishment, however noteworthy. The wedding was an honouring occasion. It was filled with love and kindness. I hope there will be many more weddings for people with Down’s syndrome, (and I really hope I’m invited to some of them too!)

I’m so done with the push for inclusion. I’m done with the push for equality if I’m honest. In all walks of life. Truly honouring someone who has been dishonoured brings restoration. And when something is restored, it means it is set right. It is no longer unequal. The scales are re-calibrated.

Honouring that comes from a loving heart can achieve so much more than any equality act or piece of legislation.

Restoring honour to those who have been the most wronged, the most dishonoured, is a good place to start.

People with Down’s syndrome are, I believe, close to, if not at the top of that list. Hierarchy takes many forms.

And there is always a way back, if we allow it. Wrongs can be righted.

The dishonoured can be honoured and restorative justice can work for the good of us all.

Restorative justice

noun

  • a system of criminal justice which focuses on the rehabilitation of offenders through reconciliation with victims and the community at large.


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Emeralds and Rubies

Photo by Sarah K Graves @ Pixabay

It’s a thing of beauty, my daughter’s favourite toy. It stands apart from the usual plastic playthings a child of her age may be drawn to. There’s a quality in the workmanship that can only be admired.

Bejewelled with rubies, sapphires, amber, amethysts and emerald ‘stones’, it spins on its wooden base with the lightest of touches. A little encouragement is all that’s required to make it dance.

Place it in the path of sunlight and it positively sings with joy.

And yet it’s fragile. Prone to tumbling off the table and clattering loudly, ungainly, disappointingly to the floor. Brushed off, knocked down, discarded.

And unless I am there to pick it up and put it back on the table, that’s where it stays. You see, my ten year old, non verbal, autistic daughter who has Down’s syndrome has never learnt that when something or someone disappears from her view, it or they are actually still there or somewhere else. Existing or existed, but now hidden. She has not learnt that her favourite toy can be experienced or even enjoyed again if only she would look for it. So she turns her back and walks away. She forgets the joy the toy brought and moves on to her next experience. 

Out of sight, out of mind. 

Until last week.

Last week was different. What changed, and why, I have no idea. Others more widely educated in these learning processes can explain. All I know is the toy dropped as it often does but this time she went looking for it. She bent down, she picked it up and it was she who put it on the table then continued to play with that which brought her joy. Her delight carried on as before, but her world had, in that moment, opened up and my delight was off the scale.

A first. An action I had given up on ever being possible. 

This time, there was no turning away and moving on to another experience. This was the one she wanted and she took hold of it with both hands. She noticed it had gone and that now mattered enough to go looking. My assumptions about her were wrong. 

Rubies, emeralds, amber and sapphire danced again in the columns of warm spring sunlight that streamed across the table. 

An ordinary table in an ordinary kitchen on an extraordinary day.

A pleasure that was hers for the taking and she was finally able to seize it.

Some ten years ago, after many weeks, she came to be discharged from the neo natal unit that had been her home and our place of safety.  A kindly consultant handled our departure and, sensing my unease at having to leave what we knew, told me of how much the world had changed even in a relatively short space of time. Just twenty-five years earlier her cousin had been born with Down’s syndrome and was routinely put into an institution. 

Out of sight, out of mind. 

The sadness in her eyes stayed with me. The if only was palpable. 

She knew there were so many colours waiting for this baby. My baby.

Ruby reds, ambers, sapphire blues, emerald greens.

I noticed she spoke only of her cousin in the past tense.

I hope someone walked with him and pointed out colours.

Like in a rainbow; though I imagine he noticed them first.

Last week the colours got a little sharper in our Down’s syndrome world. And now my daughter knows she can at least hold them in her own hands. 

I see others similar to Hazel, they are picking up brushes and painting rainbows like I’ve never seen before. New colours coming to the fore in a shifting landscape. Emerging artists taking up residence in a world that still struggles to embrace their art form. Their Down’s syndrome. 

We should not take their palettes away thinking they cannot paint. Neither should we begrudge what they find or what they are given. I have found they will share their lives, their experiences, their possessions willingly and extravagantly. They are not the ones needing lessons in humanity. From my little window on the world of Down’s syndrome Ive noticed they are often the first to show empathy to anyone who is treated differently.

When another cries in the room, my daughter cries too. Every time. 

Instead I want to stand back and watch them pick up the colours that matter to them. However they pick them up, whatever their understanding or ability is.  What will their world look like to them? How will they depict it, shape it, colour it? Who or what will they paint into it? 

I no longer want to assume I know what’s best for my daughter or for others with Down’s syndrome, or anyone else for that matter. I do not speak for them. They are not voiceless and never have been, it’s just our world paid no attention to their voice or afforded their particular art any worth. The loss of colour to humanity must be, I have often thought, incalculable. No. Instead, I want to learn from them, from the experts, the artists. I’m convinced we can all move forward into new and more vibrant life experiences when we do.

Of course I’ll have my own opinions, and in future I’ll try harder to keep these to myself if I cannot be sure they will do someone, somewhere some good. But I do want to see a people group who, though in the past were routinely placed in institutions and are still discriminated against simply because they have Down’s syndrome, are now brought front and centre where their colours can be seen as they were always meant to be. Not because they are better than anyone else, but because they’ve spent more time than anyone else under the table.

Out of sight out of mind

Some say diamonds are a girl’s best friend. I say it’s emeralds and rubies, and they can be friends to anyone.


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Listen

Photo by Javardh on Unsplash

You’d think after ten years of knowing you, I’d be an expert in you.

You’d think I’d have learnt so much about this thing called Down’s syndrome.

You’d think I’d have learnt so much about what makes you tick. Your likes, your dislikes. Your needs and your wants.

You’d think.

I am your mum after all. To some, like me, the title ‘mum‘ is badge worn with honour in all situations. To others, it’s a lazy or condescending title, used to belittle and control. Don’t call me mum they say. With feeling, with reason.

I hope they are heard.

Some say I’m supposed to be an expert in you, yet there are no letters after my name. They mean this as a compliment I think. To me it’s just a pressure. I am no expert in you. If I were, I’d know what made you cry instantly. I’d know what you were really experiencing as you bit down on your hand, making it bleed in, well I don’t know…is it pain, is it frustration, or is it fear? Help me out here will you? I’m no expert.

I ask you, every time. What’s the matter? But you cannot reply. Not in the way I wish you could. And it takes rather more than a degree or a PhD to interpret the reply you undoubtedly do give.

I try to help you learn to eat, but do you want this food? Is it to your liking? Or is it too hot or too cold? Too difficult to swallow? Too sweet? Too sharp? Shall we just give up and use your feeding tube instead? I don’t know.

And about learning to walk…how are those orthotics feeling today around your ankles? Do they hurt? Are they too tight? Is that why you fall to your knees and stay in one place, or is it because those boots are just so darn heavy?

Why have you taken your glasses off? Did they rub your nose or does the prescription need changing? Ahhh I see they need a clean. Here, let me help you with that. If only you’d said.

What would you say to me if you could?

I am no expert in understanding you. In reality, I know so very little about you. But my face is always turned towards you. My ears are attentive to your plethora of sounds. Your cry. I am sorry I don’t always give you what you need. This is not ok. I wish I could.

Sometimes I may see what it is you want but do not give it to you. This is ok. It may not be what is best, not just for you but for others around you. You are part of us and we all matter.

What matters to me most is that you are always heard, even if you are not always understood. Even if what you ask for I cannot give as it is outside of my ability to either understand or grant or it is in someway detrimental to another.

Heidi Crowter

Our friend, Heidi Crowter…who really is our friend and who we have enjoyed spending time with in the past, has recently been asking for something. Unlike my daughter, she is able to say what it is she wants. Whether or not she gets what she wants is another matter, and one not for me to decide thankfully, though she has my support and my sympathies.

What matters most to me, I’ve been reflecting on, is not the outcome of her case. As others have been quick to highlight, the judge said her appeal was unlikely to succeed. They may well be right and of course, time will tell.

No. To me the most extraordinary thing of all about her journey so far – whether one agrees with her case or not – is what took place last week in the Court of Appeal in London.

Heidi Crowter: a woman with Down’s syndrome stood publicly to speak in the Court of Appeal and was not shut down, either as she spoke, or by the decision of the judges that ensued in allowing her to appeal. All of which happened on International Women’s Day of all days.

Type the words Down syndrome into Twitter, or Google and you’ll soon find, as I did just the other day, words of hatred spoken about people with Down’s syndrome. Words that seek to destroy and shut out people with Down’s syndrome – even from life itself. I even reported one such abusive tweet that referred to another child with Down’s syndrome as “an abomination to this planet ” and that they “wouldn’t consider it as human”. Twitter responded by saying this tweet had not broken any guidelines.

Twitter replied to me, but did they hear me? I’m not so sure.

Whatever happens next in the Heidi Crowter case, that historic moment in the Court of Appeal will never be taken away from her. And I’m no expert, but I am thankful to the two judges who are. They listened to and they heard Heidi. And, I believe they understood and recognised her need to be properly heard in the highest court in the land, regardless of whether her wishes can or should be granted.

That is extraordinary.


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Park Life

Photo by Sarah Kilian on Unsplash

I took you there as a baby.

In a pram.

I wrapped you up tightly against penetrating winds and prying eyes. I pushed your sister to and fro in the orange bucket swing. I must have fed you there too. Not by bottle or blanket covered breast but by nasogastric tube. Your soft, perfect cheek aggravated red raw by a strip of sticky tape that held the tube in place inside your tiny nose.

Gravity feeding, with one arm in the air, holding up a purple syringe. Fortified milk flowed down a tube, disappearing inside the pram. I glance around the park, fearing the double take. Afraid of what people might say, wondering if they might be cruel or insensitive, as had happened days earlier when a stranger had noticed you had Down’s syndrome and a “funny tube”. They pointed right at you and it stung.

Yet, I’m secretly hoping, wondering, if someone would walk by and say something lovely; to make what hurt sting a little less.

Always wondering, always worrying.

Afterwards, we watched the ducks busy on their little island. We did not feed them; no hands were spare for that. They took no notice of us anyway, as we had brought nothing to their table.

I took you there as a toddler.

In a pushchair.

Head to toe in snow suit, thick socks and fur lined boots. I knew your feet would be cold. Unable to warm them up by running around. You were a toddler who never toddled. Your boots always as good new. I pushed you in the orange bucket swing, your sister now at school. In reality, I wedged you in, both hands holding up your floppy body against rigid plastic as we both went to and fro, awkwardly.

I’m sure I fed you there again. Less concerned by the double takes or curious looks. Your beautiful face now healed. A thousand syringes later and with a battery-operated pump to boot, the tube by now surgically placed directly into your stomach. I worried about you getting cold as I pealed back the layers and connected you to the pump.

Picnic table not required, I sat on a bench and we watched the ducks. We did not feed them, there was no room in your bag for anything other than essentials.

I’m sure you must have wondered what they were, those funny little ducks. What did your blurred almond eyes make of them, I wondered?

We stopped visiting the park several years ago and I think our world shrank a little more. I had deemed it pointless as you could no longer access the playground. We could not enjoy it the way other families did. It was unsuitable for you; a public right of way with a caveat. And dogs. So many dogs tearing around the park with exuberance. Enthusiastically sniffing out their daily moments of freedom with no lead to restrain – though the Official Looking Sign said that, for the benefit of others, they ought not.

Silly sign, the dogs did not read it.

Today you visited the park again.

In your wheelchair.

Only this time, I wasn’t there. I have seen some photos your teacher sent me. I see you share your joy and delight at this unexpected trip. I hear your laughter. I see the spring in your step, even from the confines of your chair. A blanket has been placed lovingly over your legs to keep out the cold wind. I wonder who put it there? I’m so thankful and touched that they did; it makes me cry a little. It’s something I’d do for you.

From your chair you watched the ducks. You held a stick. You’ve always loved a stick. Your face tells me that you wondered at all you saw. You shared your wonder with your teachers and classmates. No doubt you shared it with passers-by as they did a double take at the class of wheelchair users and their carers surrounding the park’s little pond. I’m certain they would have smiled too.

And I wondered who was teaching who?

Today you came back to the park. Your pockets still empty, overflowing with untold riches to give away. Pockets filled with wonder. Treasures you woke up with, stored, perhaps, under your pillow? Like some sort of biblical manna, it appears each day. Ready to hand out to those you meet. You are my miniature, giant philanthropist.

I hope you visit the park many more times.

I hope you never hide away. I hope also, that you are never on parade, rather on a par. Experiencing all the park has to offer, as others do, and giving back in all the ways I know you will. Today you were all the things a person should expect to be: surrounded, included, protected, loved, invited, heard, appreciated, present. Though the world may sometimes hold up an Official or Unofficial Sign that says, for the benefit of others and your own, you ought not experience these freedoms.

Silly sign. You cannot read it. I hope you never will.

Today you came back to the park. And, though I’ve had many sleepless nights wondering if this would ever be the case, you were all those things without me. A walk in the park may be harder for some than for others but there are always sacred spaces to be found, and shared experiences to be had.

And, perhaps in the way you do, I now wonder at it all.

Park life.


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Mum’s the Word

Recently, my almost 12 year old asked me a question. Actually she asks me loads of questions. Most of her conversation starters begin with “ I’ve got a question”. This has been the case for a very long time. I’ve been told this can be a feature of her Autism; a kind of verbal tic even, but I’m not sure that’s helpful. I see no reason to medicalise or even analyse her every characteristic. And, whatever it is, I quite like it. It gives me a moment to prepare for whatever might come next. It’s rather charming too.

Her question was this:

Was it ok for her to still call me ‘Mummy”?

She is my firstborn. She has always called me Mummy. This is my name as far as she is concerned.

And she was concerned. She had presumably heard others at school refer to theirs as ‘Mum’. She was worried that she might be expected to make a change, to fit in with others, to appease them. To not stand out or appear babyish. And here is where her autism really does kick in. Changing my name…changing that familiar, constant, never previously questioned name was a step too far for her. Venturing into the Land of Unprecedented. A change that society seemed to want to force on her. I am her Mummy. She said.

And who am I to argue?

I am her Mummy. For many years, I thought I might never be anyone’s Mummy.

We live in an age where, increasingly, we are encouraged to identify as whoever we want to. This isn’t a blog post questioning or criticising that….far from it. If I could have identified as a Mummy when I was in my 30’s and held a baby in my arms, I would have done so – in a heartbeat.  It was not in my control to do so. There was no child for a very long time to bestow that identity on me.

Eventually, after many years, M brought me that identity. I call it a privilege because it feels like one. Even now. Still. I will never get tired of hearing her call me Mummy. Or Mum, if she chooses to.

Recently, I’ve noticed a frustration creeping into the SEN/disability parenting world from parents who wish they weren’t continually referred to as ‘Mum’ by professionals in appointments or meetings. They want to be afforded the respect of being addressed by their actual name. I fully understand their reasons why, but I just don’t feel the same way for reasons I’ll try to explain. The word Mum or Mummy can often feel like a label. Slapped on carelessly at times. It can feel belittling to be in a room of professionals with all kinds of titles as well as letters after their names and be referred to as ‘Mum.‘ It’s sometimes as though before you’ve even entered the room or said a word, your opinion will not carry as much weight as theirs. You are just ‘Mum’ after all. I get it. I really do. I’ve felt that sense of inadequacy being bestowed upon me by those who believe they must know better. Thankfully only on rare occasions, but I have. But I’ve also had to recognise that, they do often know better than me on all kinds of levels. And, quite simply, being a ‘Mum’ to me is not belittling. It’s a title I love and cherish. A title that brings to the table as much as those with professional titles do. Often more so. The problem, I think, is not with the name or title – it’s with the understanding of who that name or title is.

Ultimately, this is just not a battle I am choosing to fight. I have no issue with others doing so, however. And so, although it has occasionally happened to me, and I’ve been labelled ‘Mum’ in a way that may not recognise what I bring, I’ve learnt to peel it off and reapply it as a badge of honour. A privilege. Undeserved. Something that I did not earn or study for; it was a gift out of the blue. But still mine to wear nonetheless, and a weighty one too.

I don’t think I will ever mind being called Mum. Or M’s Mummy, or Hazel’s Mummy. After years of heartache at not being one, why would I? I have many friends and acquaintances who would also give anything to have that name. Their own heartaches of baby-loss, losing a child or of infertility means that the name ‘Mum’ carries real pain and/or remains unattainable.

And, of my own two children, even after nine years, one of them has never called me Mummy. Not clearly, not properly. She is also Autistic but Non-Verbal. She sometimes forms a sound ‘Mmmmm’ when she sees me, or when she is poorly and needs me. That’s the closest she comes to using my name and it makes my heart sing when she does. So when others, even professionals, refer to me as Hazel’s Mummy, I have to admit to feeling nothing but pride. I can’t help it. It’s something I cannot ever take for granted. And I want her to hear my name used as often as possible. Who knows, perhaps one day she will say it back to me if she hears it spoken often enough.

If the role of being someone’s Mum came with the honour, respect and dignity it truly deserves in society (and not just on Mother’s Day) then perhaps other ‘Mums’ wouldn’t feel so belittled or put down.  Perhaps others who find out they are going to be a Mum will feel supported and respected enough to continue their pregnancies instead of feeling that they have no other choice but to end them. Perhaps those ‘Mums’ who are told their unborn baby has Down syndrome will be honoured and respected by being offered all the help in the world to birth and care for their child. Instead they are often routinely steered in the opposite direction and told it’s for the best. Their role as a capable Mum called into question in those first few weeks and months of pregnancy and never even given a chance. Perhaps those who have suffered the pain of loss through miscarriage or losing a child in later years would be afforded the dignity and honour of being recognised as their Loved One’s Mum – always. And perhaps those who long to be a Mum but, for whatever reason have not been handed that title, would have their pain recognised and given all they need or want to help carry it.

Titled not labelled. Dignified not denigrated.

Mum. Mummy. Mom. Mama. Mam. Me.

Mum’s the word to be shouted from the rooftops, never silenced, never shamed.


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Herons and Cranes

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I’ve been spending a few days in a relaxing and isolated place, booked pre-pandemic, overlooking some fishing lakes. As I write I can see three, sometimes four, herons gliding gracefully over head. Such extraordinary looking creatures in flight. And, once on the bank they adopt sentry status, scanning the lake for fish whilst giving a masterclass in superiority. Until they call out that is. A sound akin to finger nails on a blackboard. Beautifully harsh. Something about it grates and leaves the listener uncomfortable. It jars. Profound beauty and harshness held in tension. The herons take flight and with them my breath.

My daughter’s life, her whole existence, is profoundly beautiful yet also harsh. We live, she lives, with the tension of these truths. And, as a consequence, she takes my breath away daily.

Many, even sometimes those in our own community, see the disabled life as something to be avoided. I know I did when Hazel was born. I’ve written about it before..how I hoped she would have some kind of Down syndrome light version of the condition. Not too bad, manageable, successful even. There are no limits on people with Down syndrome is how the new mantra goes. They can learn to read and write, go to school, get a job, play sports, live independently, be models, actors, politicians, get married and so on.. All true and all good, I don’t deny it for a moment. They often do.

So don’t worry, we tell new and expectant parents; It’s only an extra chromosome. Keep calm.

I disagree.
It is not only an extra chromosome.
It is a profoundly beautiful life.

Not because of any achievement or indeed any similarity to a life without an extra chromosome. It’s beauty is in its existence. It should not need to be championed or given a reason to be accepted. It is already beautiful, profoundly so.

My attempts, early on in Hazel’s life, to disguise her ‘disabledness’ (which probably isn’t even a word) thankfully and spectacularly failed. Hazel comes with an array of visual reminders of it; a feeding tube for starters, then there’s the equipment, hoists, stairlift, adaptive chair, a hospital style bed, not forgetting bifocals for very poor sight and also soon to have hearing aids. Hazel is non verbal and makes all kinds of noises that loudly announce her presence to the world wherever we are. There is no disguising Hazel! Oh, and she laughs. A lot.

Hazel has also been learning to walk. At almost 9 years old she can now walk around the house or familiar places with gusto. Stomping and lurching as she explores familiar spaces now revealing previously hidden vistas and treasures. Her achievements are tremendous and we celebrate them daily.

And yet. Remove her plastic clunky orthotic devices and her world shrinks once more, her weakened frail ankles collapse and she falls to her knees in a single step. Those unattractive plastic devices are, to me, of profound beauty and huge importance. They are enabling her to discover new and exciting things for herself, though her wheelchair is never far away.

Wheelchairs. Feared and avoided by many parents of children with Down’s syndrome, particularly in the early years. I know this..I was one of them. So much so I opted for a buggy that looked somehow more er, um… acceptable. I thought that having a wheelchair made her look more disabled. Well. Yes I suppose it does. But that is only a negative if you also hold the view that being disabled is something to be shunned. It depends on your assumptions about disability. My assumptions were so very wrong. I mean, it’s fine if you don’t need one, but it’s also fine if you do.

Is Hazel worse off because she uses a wheelchair? Is she worse off because she wears orthotics? Or is she discovering joy every single day in new places because she has them? Is she to be pitied because she is shortly to be wearing hearing aids or will people share her joy as the sounds we take for granted enter her world for the first time? And if they don’t work, if she doesn’t take to them for whatever reason, will that be seen as failure or will she be allowed to live her life in the way she feels most comfortable?

To me, her disabilities just make me more determined to travel further into her world and see it though her eyes and ears. I desire to make her pathways less fraught with obstacles and trip hazards. Where those obstacles cannot be removed I want to help her find another way over the terrain. This is what Hazel needs from our community, from those who care for her, from medical professionals, teachers, and especially Governments. Policies, medical research, social and educational opportunities that will enable her to really live her best life; whatever support systems she needs or we may need as parents to help her. What she does not need are assumptions that her life is not worth living. That she is failing or in need of pity because she looks more disabled than another. That her life is less. Neither do we need assumptions that, as her parents, we can do it all, that we don’t need a helping hand from time to time. Caring is a very precious and undervalued thing indeed. Assumptions can be devastating, checking them and challenging them can bring change to entire communities.

A friend of mine often says to diminish one of us is to diminish us all.

Just this week I was reminded of the heart-rending story of a disabled community in Japan- the Sagimahara Institute – where, on 26 July 2016, a man attacked and killed nineteen residents and injured twenty six; thirteen of them severely. His intention was to ‘obliterate’ hundreds of people who he deemed unworthy of life. A drain on their carers.  He believed he was doing society a service.  The tragedy became Japan’s worst mass killing since the Second World War.
An extraordinary video called Sachiko’s Story Nineteen Paper Cranes tells the story so movingly and asks the question,
“Why does the world assume that a disabled life is not profoundly beautiful?”
I will not spoil the story – do watch, you’ll be glad you did – but what followed in response to the killings was truly beautiful.

Landscapes can be harsh environments to live in and journey through but at the same time profoundly beautiful. We need to adapt to their contours, their peaks and their valleys. Not circumvent them or leave them off the map. Or, worse still, destroy them altogether.

This is my daughter’s disabled life and it will always be profoundly beautiful.

#dontscreenusout


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Green, green, grass.

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Hazel, my daughter, loves farm animals. Cows, sheep, ducks, horses, donkeys; Old Macdonald’s entire collection amuses her. Farmyard Tales of Chloe the Cow is a favourite picture book of hers. Giggles every time we read it.

There was a time when she wouldn’t look at animals. An entire trip to a farm park or zoo and she would turn her head at every exhibit, steadfastly and determinedly look the other way.

Try as we might she wouldn’t look at the animals we’d brought her to see. Not sure why. Perhaps they scared her. Maybe they were too enormous for her to deal with. Whatever it was she blanked them.

They were not acceptable to her.

Now she is a little older she no longer shies away from those same animals. Instead she watches them, she laughs at them, though she has been known to aim a rather firm boot in their direction if they get too close.

Hazel likes a cow. Especially when it moos; it makes her giggle. She has a cuddly one at home called Daisy. Daisy the Cow.

Strange creatures if you ask me, cows. Constantly grazing. Tearing up grass and then moving on to new and better pastures. Never really satisfied, always eating.

There are over a 1000 species of cow in the world apparently. Plenty of giggles to be had then Hazel!

But there is one species of cow that I hope she never finds out about.

It’s big. It’s scary. It’s overwhelming. Most people don’t want to look at it. They’d rather pretend it wasn’t there. Look away. The proprietors of the farm parks it is usually found in are acutely aware of this fact and so have thought long and hard about to make this cow less scary, attractive even.

Its image problem is so great and potentially very damaging to its owners that they have disguised the cow. So good is the disguise that most visitors have no idea that there is a cow there at all. They do not see it. The owners have dressed it up and given it fine clothes to wear. Now it is respectable and acceptable; praiseworthy even and by rights it must be honoured. Its existence must never be questioned or its true identity revealed.

Here in the U.K this cow goes by the name of Choice, not Chloe or Daisy.

This cow is no friend to Hazel, or anyone else with an extra chromosome. This cow is not cuddly. It will not make her laugh. This cow is bred and sold by a Global Genomics Organisation. This cow is making them vast sums of money in detecting more and more babies with Down’s syndrome, in utero, all over the world.

This breed of cow is a Cash cow.

This cow is hungry but does not eat grass. It’s appetite is for children. And if you don’t believe me then watch this video to hear it from the breeders mouth. They are very pleased with their cow. It’s prizewinning. Best in show.

I’ve seen this cow; I wonder if you have too?

And now that I’ve seen it I refuse to look away and cannot remain neutral, for this is a cow that will affect my daughter and anyone else with an extra chromosome for years to come. It doesn’t just affect the unborn, though they are the ones the cow desires the most. This cow affects people I love. People I value. People who have as much right to breathe the same air as the rest of us. People.

I cannot look another person with Down’s syndrome in the eye and celebrate their lives whilst ignoring this cow or trying to remain neutral. You see this cow thinks children, and by association, people with Down’s syndrome should be screened out, devoured before they are even born. This cow deems them worthless and disposable, yet at the same time sees pound signs over their heads and goes all out in search of them.

Priceless rubbish.

This cow tried to devour my child but failed. It wants the likes of her screened out prenatally. This cow will do all it can to devalue her life and the lives of others with Down’s syndrome. It is in no danger of starving; the grass is very green and business is booming.  This cow is not remotely interested in offering women choice in their pregnancy, only in limiting it. I hope my daughter never finds out about this cow. Sadly, many people with Down’s syndrome will have found out about this cow and may wonder what they have done wrong to deserve such treatment. How unimaginably distressing to find out you are so despised.

Neutrality is not an option for me. I know I am not able to stop this cow; I am no match for it, that’s for certain. But I will face it and call it by its name as long as it feeds anywhere near me and the people I love.

This cow isn’t called Daisy and it certainly isn’t called Choice.

Its real name is Discrimination, its breed is Deceptive and its origins are in Eugenics.

We must stare it out.

 

H on farm

For more information go to:

Don’t Screen Us Out


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Rainbows & unicorns

rainbow in trees

Missing Person:

Goes by the name of Hope.

Last seen somewhere around New Year’s eve.

Reward for anyone who has information on her whereabouts.

I wanted to give my first child the name Hope – or at least her middle name. I didn’t in the end. Husband said at the time that the name reminded him of a hospital; a kind of Mercy Mission of Hope reminiscent of his former Catholic upbringing. So we opted for something else.

(Apologies to anyone reading who is called Hope by the way – I still think it’s a lovely name.)

Hope is the reason I write this blog. I may not possess many academic qualifications in life but I do possess hope. And I think I am qualified to speak about it.

Hope is what I have been given over and over throughout my life, in so many situations. Even when there seemingly was no hope. I was given it. I didn’t create it. I didn’t fabricate it. I didn’t conjure it up. It was given to me and I took it. But I did look for it. More than I looked for anything else.

I was given it when I thought I’d never be able to have children.

I was given it when I was hours from death in Intensive Care as all my major organs were shutting down. Intensive Care is a place that, understandably, generates fear for many right now. For me, it generates hope more so.

I was given it when my daughter Hazel was born with Down’s syndrome. My GP gave it to me. He told me what I needed to hear over and above the voices of doom that had told me what a terrible thing it is to have a baby with Down’s syndrome.  He gave me hope that life, although never the same, would still be worth living…and not just at some point in the future when everything was back to normal. It would never be back to normal. But it could be, would be worth living.

Hope was given to me when Hazel was so very seriously ill and we did not know if she would survive.

And here’s the thing. The hope I had was not reassurance that she would be ok, that I would be ok,  or that we would be ok. We weren’t ok. Neither was she. She was very, very ill. Dangerously so, and I had been too.

The hope I was given, was that through it all, somehow, fear would not have the final word. Fear of what was happening would not define how we lived, how we responded to each other or to the situation we found ourselves in. Hope meant that the fear we were so readily inclined to feel would not have the final say in our thoughts and uncertainties we carried about the future. We knew things could get worse, we did not live in some kind of false hope that all would be well. It might not be.  But life would have hope. Hope is about the here and now as much as it is about the future. If anything it matters more, here and now, than in 2, 3 or 10 or 20 years down the line. Fear is to be expected but hope is vital. Now.

And Hope is missing.

Right now, in the middle of a pandemic, hope is being looked for but it is largely being concealed by fear. Fear seems to choke the life out of hope. Fear grips like nothing else can. Fear is spread whether through word of mouth, news images, misinformation, or simply because there is danger and we are afraid. Fear is the natural response. There is real danger. People are dying and families are hurting; I do not seek to minimise anyone’s pain or suffering for a moment.

But fear does not have to be the only response.

The hope I have is that my life and the lives of those I know and love, however long or short, will not be dominated by fear. It’s the life I see my daughter who has Down’s syndrome living too. She lives a life of daily acceptance. It is a life that is permeated by hope, not fear. Yet she has had more than her fair share of difficult experiences. Still she does not fear the way most people do.

Hope has been given to me out of love. When I was so ill it was from people who lovingly did their job and saved my life. People who cared and people who knew that my fears, however well founded, were not the only thing at play. My faith too plays a part. A God given hope that can confront fear even when facing the threat of death itself – which I have – of my own and that of my children both inside the womb and out.

And perfect love drives out fear – a simple, yet profound bible verse I choose to take hold of and speak out over my own life, my own fears.

It is vital that people are given hope. Not false hope, but real hope.

Hope doesn’t necessarily mean a way out of something, such as a vaccine,(important though that is) or even a way through something. Hope is not about believing in Unicorns. Hope means being able to live in the moment without being paralysed by fear of what may or may not happen. Hope means being able to carry on when all around you are telling you to do or live otherwise. I’m not talking of being reckless here or promoting selfish behaviours. I’m just saying that there is another story to be told, another truth to take hold of. Fears may come to pass, they may not.

Hope speaks of living free from those fears.

Parents who find out the baby they are expecting may have Down’s syndrome are rarely offered hope. They are offered lots of other things – many of them good and well intentioned. Information they receive is improving. It should no longer be outdated (though often is), due to the efforts of many in our own Down’s syndrome community.  Yet even we’ve convinced ourselves that is all they need. The right information in order to make the right decision for them. Yet how many women go to their prenatal scans simply looking for information? Most are also looking for hope too. If, as most parents of children with Down’s syndrome will tell you, life is still worth living and full of hope, then why is that not the first thing women are told when they find out their baby might have Down’s syndrome? Is it because fear has a stranglehold on hope? Fear has the final word. Hope is not even allowed to enter the waiting room, let alone the discussion in the scan room.

In times of crisis, personal or global, hope is needed more than ever. Rainbows have appeared in windows and balconies around the world. People are looking for hope in a world gripped by fear. Rainbows are real even if unicorns aren’t.

Perfect love drives out fear. People with Down’s syndrome are, in my experience, people who love unconditionally – often more than most. And, as a consequence, fear is driven out. It has no place in their lives in the same way that it so often has in others.

My daughter Hazel has Down’s syndrome. She brings hope as well as joy to this world. And hope is needed more than ever.

People with Down’s syndrome are needed more than ever.

#dontscreenusout