Downright Joy

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

Category Archives: autism


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Bucket List

Photo by Phil Hearing on Unsplash

What’s the correct name for it? The sparkle you get on the surface of the sea especially in summer…… as sunlight catches the ripples, usually on a calm day. A gently moving carpet of glittering diamonds, shimmering and shimmying as far as the eye can see. 

I’m not sure there is a name for it. It’s far too beautiful a sight to be contained by a single word. It takes my breath away every time I see it, which is not that often as I do not live by the sea.

I wonder if I would tire of this sight if I did? It’s a sight I long to see every year. Most years I’ve been blessed enough to see it. It makes me smile. Every single time. 

I don’t have a Bucket List. You know the sort of thing, a list of places I want to visit in my lifetime, and or experiences I want to have at least once before I die. A cruise perhaps, or a trip to the Northern Lights. I’ve never fancied jumping out of a plane but I wouldn’t say no to a Trip on The Orient Express. Or Vienna. I’d quite like to visit Vienna. But I don’t have a Bucket List. I don’t really have a list at all.

Bucket lists are hard to fulfill when you are the main carer for someone you love. A list filled with experiences that may never happen simply because to make them happen would require the movement of both heaven and earth for most carers and the one(s) they care for. I don’t think many would deny that being an unpaid carer involves a level of sacrifice and loneliness that most people will never have to give or experience…unless they become one themselves, that is. Not only that, but the name Bucket List doesn’t sit well with me, it feels sort of depressing; though of course I know that one day I will ‘kick the bucket’ like every other mortal on the planet. 

Personally speaking, having a Bucket List is a pressure I can happily live without.  Don’t get me wrong, I would love (I think) every one of those experiences I mentioned and may have dreamt about as well as more, should they ever come my way. For now, and for the foreseeable future (which is a strange thing to say I always think, because the future is not really foreseeable for any of us) I am content to enjoy those experiences that often come with no name but that make me smile, make me catch my breath. And there are some I don’t enjoy at all that are also to be collected, valued even.

Some happen to me occasionally, like visits to the seaside. Others daily, hourly. Often.

Like the moment my daughter, who has Down’s syndrome, laughs out loud at who knows what. It’s a mystery but it’s very funny.

Or the moment she is given shoes that don’t rub her little feet red raw anymore, along with splints that fit correctly. She marches off, instead of hobbling. Her legs still tire, and when they do she beams as she sits back into her wheelchair. She cannot tell me her joy or her pain in words as she has none. These moments sparkle as much as the sea sparkles in the height of summer.

Or the moment her sister instinctively helps her off with her coat or shares an armchair with her. Though she shares more than an armchair; she shares her time, her attention, her love. Getting back in return seemingly nothing sometimes, but in reality everything and more. What is the name for that? Some say siblings of people with Down’s syndrome suffer. They give it a name, even though they have never sat in the same armchair, or taken off her coat. How dare they so falsely name an experience of which they know so little.

Sometimes it is the moment just after another procedure, operation or clinic appointment. Heart heavy with loving her through yet more trauma. Hers and mine. Tear stained walks along hospital corridors, telling myself and her “It’s over now, it’s ok, we’re going home”. Knowing that it’s only over until the next time. Knowing that it doesn’t really get easier. 

Even the kindness of the medics can be painful and I have been known to crumple.

These moments are harsh, but they are also profoundly beautiful. The love swells, mingled with pain, making it ever more precious.

Oh but I do have a Bucket and I am very fond of it. It’s not shiny, it has holes and probably needs a good clean. Yet it is filled with experiences I would never have imagined possible before I was gifted the responsibility and privilege of caring for this disabled child and her sister. 

Many of these experiences have no name, some are incredibly painful, others joyful beyond measure; and I treasure them all.

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Birthdays

Image by M W from Pixabay

You love a birthday, you.

No matter whose it is. 

Candles lit, you know what follows;

A song, golden flickering flames that vanish on a

cake that others will swallow.

You love a celebration, you.

No matter what the festival.

Be it Christmas, Easter, or any other occasion,

you were born to share in another’s joy

Amplified by your elation.

You do not ask for anything, you.

Nor do you come to me with a list,

Though I would fulfill it in a heartbeat if you had.

You desire not to possess the latest fashion,

So why does this still make me sad?

You do not know tomorrow is your birthday, you.

Anticipation comes at the moment you see

Not the presents, they cannot hold your attention.

But the cards, the candles, the faces that sing

Happy Birthday to You in joyous affirmation.

You won’t know it’s your birthday when I’m no longer here

to tell you the moment you open your eyes.

If you have not anticipated your special day then there can be no pain

Or disappointment when no cards arrive, nor the candles

 that I’d light for you again and again.

You don’t know how much you are loved, you.

Or how my fears simply cannot come to pass.

You are surrounded by those who love you as their own.

You were never mine to keep, your gift is to so many

And I know you will never spend your birthday alone.

Happy Birthday Hazel x


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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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Listening to you

Photo by Brands&People on Unsplash

Two terrible words were spoken with some force over my non-verbal, severely disabled daughter recently. A moment of frustration by one who briefly had care of my child and ought to have known better, but, for whatever reason, didn’t. I write this not to invite a pile on or indeed look for sympathy. Their words alone have brought enough shame on them, whether they know it or not. And they remain a good person who made a mistake. This is not about them.

But their words did damage.

Not so much to my child; as in an apparent, one-off moment of uncontrolled frustration, the words spoken went literally and metaphorically over her head. She could not/did not understand them, though she may have felt their force. Others heard, however. Worse still, another child heard. And that matters.

In the space of two brutally uttered words, a story was told to anyone in earshot, especially that other listening child. A narrative of shame. I wasn’t there to hear them spoken first hand and indeed I was calm as I wrote them down on a post-it note during a phone call I don’t think I’ll ever forget.

As I did so, my mind began to fill with many more brutal, ignorant words that have been spoken over her by others. People who have had an audience of others to hear them.

Risk. Burden. Problem. Tragedy. Sorry. Terminate. Deal with it. Get rid of. Did you know before hand? Didn’t you take the test?

Words that hurt then but more so now, alongside words of comparison that continually attempt to steal my joy. Not her joy, thankfully. That appears to be intact.

Words that suggest she is unworthy of life itself. That being human can’t surely mean including people like her. Genuinely? I think she embodies being human; and….quietly, simply, she includes the rest of us without question.

Lately, I’ve more keenly felt this unworthiness that is pinned onto her life in so many ways. Whether it is the lack of good health care and research that doesn’t just label each problem we encounter as ‘typical Down’s’, or the lack of opportunities for her to be fully part of our wider local community. Then there are the barriers around her physical development that do not seem to be there for children without a Learning Disability. Or perhaps it’s her future, and ours. What will become of her? What kind of opportunities will she have as an adult? How will we/she cope? Who will care?

This incident simply served as a trigger to all those feelings and more.

I closed the call and found myself in pieces.

She lives her life at the very opposite of the words spoken forcefully over her by those who do not know her or even wish to know her. Words spoken perhaps through fear of what they do not understand. Or in anger towards that which appears out of their control. They make sense of these emotions by framing her in the closed doorways of their own prejudice.

She is positioned to suit them. Their narrative. Their take on the world. Their needs. Their concerns. And she remains outside the door. Hurting no one yet on the receiving end of cold, harsh judgements.  Others then hear this narrative and are empowered to proclaim it too.

Yet I am thankful that there are those people in her life whose doorways are open. They position themselves before her, at her feet. In front of her wheelchair not behind it or above it. Many of them. Not least her teachers, respite providers, disabled community support workers and volunteers, her family and our friends and more. People who take up a position not in some kind of worship, adoration or even deference, but a posture that looks up at her in order to learn and care. Not one that looks down in order to control.

The spoken word may carry truth, joy, hope, compassion and ultimately life to the listener. It may also carry fear, anger, pain, confusion, untruth and even bring death to the hopes and dreams of whoever might be listening.

Narrative:

A spoken or written account of connected events; a story.

The narrative about my child, and others with Down’s syndrome or other Learning Disabilities, has been collectively written. It is then spoken out by and to a society that stands above them instead of kneeling down and facing or even looking up at them. Control, fear, and, perhaps, an unwillingness to humbly learn from a different other.  It’s the natural response for many and, before I knew my child, I was guilty of it too. This post is not about the condemnation of anyone. 

I am thankful for those who open their doors, welcoming my child in, then daily kneeling down in front of her to care. Their words and actions are life giving, not soul destroying. They help rewrite her story.

And, because of them, her story has become a sacred text; highly valued and important amongst the Chronicles of what it is to be Human.

Reader, if you’ve read it, please pass it on to someone who has not; for no one should ever be called a stupid girl.


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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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Weightless



Experts.


They said I should grieve, the day you were born.
Mourn the child I had imagined.They said it was ok. To be expected. 
Deep down I knew this not to be true. 

The same experts

Gave me permission to end your life, before you were born. 
They said it was ok. To be expected. 
Deep down I knew this not to be true. 

Other experts told me I had simply arrived at a different destination. The plane had been diverted to somewhere new.  
Deep down I knew this not to be true. 

Each expert expertly dishing out a new sense of entitlement to add to my collection.

Gathering up our things, we left the hospital some weeks later. Your eyes wide with adoration and wonder, you carried in your arms only dependency and a total acceptance of all you met.

My eyes wide with adoration for you. Yet wide also with fear
at how I might protect you or worse, fail you. I carried you, tightly, so tightly, in my arms. You weren’t that heavy. Yet you came weighted down. The scales of injustice, entitlement and expert opinions tipped heavily against you, but in reality, weighing me down, not you.


You were even given a different chart to follow in your little red book. The shock of the standard, socially acceptable, growth chart being ripped out in front of me – as a sticking plaster is ripped from a wound – will stay with me forever. You won’t be needing that one, the expert said. 

And in this post neo-natal world that we now live, you and I; we are almost a decade on. We now have a collection of expertise and entitlements to fill a library. More recently, Pandemic life has brought out all kinds of new publications. Hospital appointments/therapist meetings, education meetings and more all take place via a computer screen. And, faster than you can say “lockdown”, I can spin around to my zoom backdrop of strategically placed books, and whip out the relevant chapter and verse to quote to whoever will listen. I can read them my rights. Your rights. We have lost so much this past year and ‘Someone’ needs to give it back. You are entitled. I am entitled. Now I’m the expert.

Pandemic life has, I think, brought out so much entitlement. Bookcases are groaning under the weight of expectation. Rights.  

Yet never once have I seen this entitlement in you. It is a weight you steadfastly refuse to pick up let alone carry. You have no need for this burdensome thing. ‘Someone’ can keep it.
Every day you tell me to put it down, though you never say a word.


You are the expert. You always have been.
In humility. In being human. In welcoming another’s life, not mourning it. In asking nothing more than to be loved whilst you freely give of your own endless supply. In moving on to the next experience once one has ended. You were always destined to be here. Not somewhere else.

You are the expert In showing me how to live my own life. You have shown me that I do not have to carry the weight of entitlement for it is a false prophet. I have not given anything up, lost anything, been robbed or have need to mourn. None of it was mine to own in the first place.

With your extra chromosome – oh what a gift I have been given! Undeserved. Not entitled. 

Gifted. 

There was never any need for grief when you were born. Or any other weight placed on you or me since, for that matter. Your very being tips the scales of what is deserving and honourable. It turns the wisdom of the wise upside down. Weightlessly so.


Deep down, I know this to be true.


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You

I see you, Autistic Man, Woman, Teenager, Child.

My child.

I see you claim your identity.

You wear it proudly, a mark of distinction. Unashamed of who you are.

You are, some say, a person with Autism, but you’re not having that.

You do not shy away from your label, for it is sewn into the very fabric of your being.

Each thread woven together in its diverse and beautiful pattern.

You are happily defined by it. It does not frighten you; neither does it frighten me.

You are fully human.

You are my first born child.

I see

You.

I see you Down syndrome Man, Woman, Teenager, Child.

My child.

I see others decide your identity for you. Defining it and, in so doing, devaluing it.

I see others, myself included, debate your identity. You are not, they say, a Down syndrome Man, Woman, Teenager, Child. My Down syndrome child.

You are, they say, a person with Down syndrome.

And yet..

Your label, your extra chromosome, is sewn into every fibre of your being.

Each thread woven together in its diverse and beautiful pattern.

You may be happily aware of it or, like my child, you may be happily unaware of it.

But you are, I venture to say, defined by it and that should be ok, for Down syndrome is a glorious thing!

It does not frighten you; neither does it frighten me.

If others did not seek to devalue your identity and your worth there would be no need to debate it. People would simply accept it. Accept you.

You are fully human.

You are my second born child.

I see

You.


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Seasons

What’s that phrase…. the one when a writer gets stuck for words? You know, when they can’t put pen to paper or find the words that, at other times, flow so readily….that. No, I can’t remember either.

Whatever the expression is I’ve got it. Had it. Still have it. I haven’t been able to put my thoughts down in print for a while now. Apart from one short article for the Down Syndrome Research Foundation, I’ve drawn a blank. Is that the word? No, no, but it’s something like that. Begins with a ‘b’, I think. 

I last properly blogged in July. By a lake. In a spacious and peaceful place.

A pause

A pause in a year that has drained me of words. And of so much more. 

Oh, this isn’t a lament about how hard life has been in a pandemic. Truth is, I don’t have the words for that particular story. And, even if I did, I know there are so many others who could tell their own difficult story; families like mine, who’ve had their vital support networks pulled, whose tired faces and weary, worn out expressions say it all; dreading the prospect of schools ever being closed again should the need arise. Teachers who (for me) have been the unsung heroes of 2020, continually being asked to go above & beyond what is expected of the rest of us and yet often criticised from all sides. I haven’t even mentioned all the other frontline key workers. People who haven’t spent months at home baking cakes, crafting, doing DIY or bingeing on box sets. And I’m not having a pop at anyone who did those things, but, you know, honestly? Jealousy is something I’ve battled with this year!

No. They don’t need to read my story and neither does anyone else. I’ll keep my thoughts about the last eight months to myself, at least for the time being.

For now, I remain lost for words. Unable to adequately communicate my deepest or even shallowest of thoughts.

Like Hazel.

Hazel is my daughter. Hazel has Down’s syndrome. Hazel is the clearest communicator I know but her language is an unspoken one.

So, like Hazel, I think I’ll laugh out loud at whatever I find amusing, whenever I find it. 

Like Hazel, I think I’ll stare intently at shiny things, bright things, beautiful spinning shimmery things.

I’ll stare at pictures I like, photographs I’ve taken, faces I see. I’ll smile at those. Like Hazel. She smiles at people. Often. Even if they don’t smile back (but they usually do). 

Like Hazel, I think I’ll run my hands over surfaces or textures that I like; the pebbles we collected in a brightly coloured bucket on a Devon beach, one July day. Seaside stones that now form a kind of miniature sculpture on my patio. A shadow of their former glory as the surroundings have changed; but I still like them. They make me smile. They cause me to remember a very happy day spent by the sea after many not quite so happy days in lockdown.

Hazel smiles often. I think she remembers often too. More than most people, perhaps. I’m convinced she regularly deposits joy for herself in her memory bank and withdraws it on a daily basis.

Like Hazel, I will explore my surroundings. I shall reach out and feel silver sage leaves between my fingers or inhale the scent of fresh mint picked from my little herb garden. I say garden, it’s no more than a pot really, but as it exists in my garden that alone brings me joy.

Still, no words needed.

Hazel is nearby. She has a stick in her hand and fallen leaf litter at her feet. She will always choose the opposite textures to me. Sand over stones. Sticks over sage. And leaves. Leaves are her favourite. Especially if they are falling around her. I know she loves them. Once upon a time she would say so.

“Leeeeeaaves“

As I hold them above her head and let them fall.

Her face lights up, arms stiffen and hands wave.

“Leeeeeaaaves“

Now, there are no words. She has lost them. Autism, or something, has stolen them. A gradual lockdown, of sorts, in a part of her brain. Not of her making or choosing. It came without warning. No one can tell me if or when the restrictions will be lifted. It’s hard to find the words to describe how I feel about this too. There are some losses, some experiences, that cannot be put into words because words are not always what a grieving soul needs to hear. 

Hazel accepts what is with a peacefulness that passes all understanding.  She is truly a mystery. Marvellously so.

She still loves leaves and the leaves still fall as they’ve always done. Hazel is thrilled by that, just as she’s always been.

If Hazel feels any sense of loss, she does not show it.

Somehow, the words are not needed.  At least not for now and not in these moments. For now, I will take a leaf out of her book. Literally. I’ll hold it the way she holds it. I’ll feel it, turning it over and over in my hand. I’ll marvel at it. I’ll shout with glee as the leaves fall around me. 

Messy and colourful; swirling noisily around me.

Like Hazel does. Like Hazel is.

She was born in the Autumn. It was messy back then too. Hard. The Great British Bake Off was on the television screen in the NICU restroom, in only its second season. Strange, the things you remember. And I remember there were lots of leaves. A carpet of them right outside the hospital entrance. Such a beautiful swirling mess.

Seasons

Like Hazel does, I will try to live in the moment. Not for it, but in it. Not worrying about tomorrow, for tomorrow has enough worries of its own. 

I will not try to find the words to explain to anyone how life is or has been of late. There aren’t any. 

There are just seasons. 

“Waste your time, but do it joyfully. You are here once. Wasting time is a sacred activity. ” Gilo


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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