Downright Joy

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

Category Archives: autism


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Trampling Through Tulips

Photo by Marija Zaric on Unsplash

For those of us well versed in all things Down’s syndrome related, we are likely very familiar with the poem ‘Welcome to Holland’ (You can read about it here if you’ve not come across it). 

Perhaps it was handed to us as new parents around the birth of our baby; a child born carrying an additional chromosome.  Or perhaps we stumbled across it as we trawled the internet searching for answers to allay new found fears and uncertainties in those early days of parenthood.

It’s a poem that divides opinion in our community, but this isn’t a post about its virtues or its vices. If anything, I’m Team Italy…mostly because of my family connections with a country that has long had my heart for many decades. So, Welcome to Holland did little for me when I was introduced to it some 14 years ago, but it still has its place for others, I cannot deny.

In reality, neither my experiences of the Italian way of life, or my understanding of how the Dutch operate bear much resemblance to where and how I actually live, as the parent of a teen with Down’s syndrome and complex needs.

Mamma Mia! 
The tulips round my way are long past their best.

No. Instead, I find myself residing here, in Suburbia, living at Wit’s End. Brought here on the Sleepless Night (after night) Bus, without it seems, a return ticket. Hopping on and off along the way to search for answers to this month’s health dilemmas. No, I’m wrong…..searching first for an appointment to look for answers to this month’s health dilemmas. Trying doors that say “Welcome” or “Open” only to find them cruelly locked from inside. I think, on occasion, I may have imagined the sound of laughter from within. 

And so here I am, living at Wit’s End. Carrying little else but the complex needs of my disabled child. Bags still hopefully packed with my dreams for her life. For our lives. 

Yet it’s here, not in Holland or Italy, that I find, in fact, I’m not alone. If I thought the centuries old, cobbled back alleyways of my beloved Sorrento were crowded with fellow travellers, it’s nothing to this place. It’s not very Instagrammable though, this Wit’s End. I’ll give you that.

But it’s here we gather. Each bringing our own stories of how we got here, of who would not listen to us, of who dismissed our fears or rubbished our requests for help. Telling each other stories of how many times our loved ones (and us as care givers) were failed, ignored, mistreated, maligned.

You would be forgiven for thinking that Wit’s End is the most depressing place on earth. 

And yet it is here I find my community. I find those who reached this destination long before I did, and are ready to welcome me into their homes, to explore their hive-minds, share their lives filled empathy, understanding, compassion, humour and so much more. Here I find, almost without fail, someone who will ask me “Have you thought about this…?” Or “What about trying this, it worked for us.”

It’s here, in the village of Wit’s End, I’ve found people who want to know and understand my child, and me. I’ve found Complex Carer Nurses, I’ve found parents of children with Down’s syndrome and or other conditions and complex needs. I’ve found other Wit’s Enders ready to make me laugh and not take myself so seriously. Quick to bring perspective, a joke, a slice of cake and a cup of coffee. There is, I’ve found, an end- less supply of Wit to be found here and I am eternally thankful for it. Heck, in my neck of the woods there is even our own Farm …a place with those ready to share our load and give us respite from our travels!

One of the most beautiful things I found about the Italian way of life, aside from the art, the architecture, the scenery, the beautiful weather, the food…..I could go on……is how much they know each other and are known by each other.  The sense of community there, I’ve always felt, is to be envied by us more insular Brits. But perhaps my beloved Italian culture is closer to my own experiences than I think.

Being known and heard is everything when you are a carer to a child (young or old) with complex needs and disabilities.  I may have been driven on many occasions to Wit’s End by circumstances and by not being seen or known. Yet when each time I arrive, without fail, I find friendship, laughter, hope and comfort that I am not alone.

Welcome.


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Sparkling

Photo by Noah Clark on Unsplash

As I write, the long summer school holidays are almost at an end.
Seven weeks in total; it was meant to be six, but Hazel’s unpredictable health issues meant the holidays started early for her.
This could so easily turn into a post about coping (or otherwise!) with a child with severe disabilities and complex care needs when routine takes a back seat and ‘what shall we do today and will we be able to do it?‘ assumes the driving position.
It could so easily become a post about me and my frustrations. But, honestly, where’s the joy in that? When I set out years ago writing this blog, about this Downright Joy, I guess I only had one idea of joy in mind. The joy Hazel brings to our lives. Many times, I’ve called her my joy giver. And she is. She still does. That hasn’t changed. Yet Hazel is also growing up. Her joy is still treasured by me but, much more so, it is needed by her.

This summer I’ve noticed something about her joy.
Her joy is greater, when it manifests.

Wider smiles, deeper belly laughs, fast and furious ribbon waving.

When it manifests.

It manifests when someone wants to share it with her. A new or familiar face who takes the time to smile at her, say her name, say hello, pick up a ribbon and wave it too. A face that isn’t busy getting the lunch on or sorting through the laundry or dealing with another medical appointment or or……..

The irony is, I suspect, that Hazel is knowing greater joy because she is knowing greater sadness.

How is it possible that a human can grow up and yet shrink at the same time?

The summer break from routine has shown me clearly that this is a thing. I think I first noticed it a couple of summers ago in fact. Familiar faces, teachers, TAs, bus driver, school bus assistant, fellow passengers, friends, even medical professionals we are regularly involved with, disappear off on much needed and well-deserved breaks. This, on top of much less time at school since the pandemic and school life that has never fully recovered.
July blends into August and regular activities break for a while. Life itself seems to take a welcome pause. We welcome it too. Our busy world relaxes a little. Yet Hazel’s world doesn’t only relax at these times, it shrinks. It becomes less than in many ways.
Whilst the rest of us have calendars to count down the days or plan and prepare for adventures, Hazel just wonders where did everyone go?
And with her generally contented daily disposition of taking life as it comes, creeps in a little sadness. Hardly noticeable at first, but over time her eyes begin to lose some of their sparkle.
Holidays away help of course. Changes of scene have always been good for Hazel, but I have to recognise they come with confusion and can contribute to her feelings of uncertainty or anxiety. It all adds up.

And here’s what I’m noticing more and more as Hazel gets older. It’s not routines she misses; however good they may be. It’s not even familiarity itself. It’s people who will share her joy, no matter whether there is an activity or none. People who have the time to spend with her, whether it’s brief moments or something longer. People she knows, and people she hasn’t even met.

It’s the volunteers she beams at who walk alongside her, helping her to safely ride a pony again at Riding for the Disabled. It’s the faces of those she knows and loves who welcome her when she visits her beloved farm. It’s her carers who chat away endlessly with her, making even the most mundane of caring tasks fun. It’s the circus performer who smiled at her and beckoned her into the ring to join in the end of show dancing from her wheelchair. It’s the unexpected (to her) visits from her older sisters and their husbands…the joy, oh the joy of being able to share her delight with them. Often, just being in the same room with them, wasting time, is enough to start up the joy slot machine, and it pays handsome dividends.
These are the kind of people that bring the sparkle back to her eyes and the smile to her face. School brings this too and I am thankful for the new term; but one day that will come to an end. What then?

Hazel doesn’t so much need busy programmes, or events to fill her days, though she will enjoy their benefits.
Hazel needs connections to make.
Hazel needs company to keep.
Hazel needs a community to belong to and to bless.
Hazel needs to be known and loved.
Hazel needs to share her joy.

This is perhaps my deepest longing and prayer for Hazel’s life; that she will daily be able to share her joy.

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


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Silent Disco

Photo by Bozhin Karaivanov on Unsplash

Who saw you today?

Not on the pages of an inclusive advert, or some clever marketing campaign.
Profits helped along by an investment of virtue signalling.
The ahhh factor leaves a sense of pride, of doing good.
Progress none the less, positive images welcomed by most, including me.
No criticism, no envy, there’s room for us all, and all of us are needed, ultimately.

Not on the pages of social media, as we scroll, pause and smile for a few brief moments to notice difference and give it a like.
Nor in the sound bites and platitudes of an inspirational news story or televised fundraising event.
Down’s syndrome mentioned to the masses in the same breath as your name.
As if your difference it isn’t obvious from your photo and therefore necessary to firmly and quickly affix.

In a digital age it seems to me that these are the places you are most definitely wanted.
Needed even.
Increasingly so.
I’ve wanted this too, and many I know who work tirelessly hard to bring this about, for reasons of good.
Yet, the varying motivations for wanting or needing this exposure seem, at times, to compete, and end up blocking you entirely from view.

Were you routinely seen today in the park, or the mainstream school or the cafes, restaurants or bars?
Or in the Church or the shopping centre, or the swimming pool?
How about the Pharmacy, or the Dentist’s waiting room, or when queuing for a bus?
Will you one day be seen at the Jobs fair, or the college open day; are these places even open to you?
Your kind of diversity seems to do best in a photo opportunity; contained within (Facebook) borders that have yet to be crossed into a new way of life that is good for us all.

Did anyone, aside from your teacher, see your Monday morning joy-face as you entered the classroom of your Special School today?
Or hear your laughter at the same point in the same song we sing together every day?
Did anyone see you fall silent last summer when your world shrank a little more and, for a few months, you rarely left the house?
Did they get to share in your delight as you danced in the living room for the hundredth time to Daydream Believer?
You danced like no one was watching: you’d do the same even if they were – a silent disco isn’t the place for you.

Are you needed by society? Definitely.
Are you wanted by society? Yes, but only to a degree.
I’ve noticed you are routinely missing from it, yet, it appears, you are not routinely missed.
Except by those precious humans in our lives who hear for themselves the music you play and collect the colours you bring; they make sure that you are never unseen.
And, except by me.

For the “foolish” things of God have proven to be wiser than human wisdom. And the “feeble” things of God have proven to be far more powerful than any human ability.

(1 Corinthians 1 v 25 The Passion Translation)


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Pocketful

Photo by Alexander Grey on Unsplash

We collected five on our way home from the hospital today.
Five!
Not two or three or four, (which would still be good) but five.
In February of all months, or Kale-monath in Old English, named after a cabbage, I have gleefully learnt.
A perfectly sensible name for this month, at least it is if you happen to live in England.

Five; all now safely stowed away in my coat pocket.
Snatched almost rudely, as if in short supply then shoved deep inside lest they be stolen away.
Now stashed amongst scrunched up tissues and the remnants of an autumn leaf I have not had the heart to throw away, both constant reminders of the season we’re in.
A pocketful of things I would not be without, when I am with her.
Free stuff.

Five in one walk is a record for us.
Our faces lowered as we battle the elements of a dark, bitter afternoon; February revels in its cruciferous status.
She laughs as her wheelchair jolts and bounces over once subterranean but now emerging tree roots.
I do not laugh; today I am weary of visiting hospitals and sitting through endless appointments, either in clinics or at home for this won’t take long and they’ll be as quick as they can.
I am cold and wet and her wheelchair is heavy and these roots are monstrous and, and…oh hello there…thank you, yes you too.

Our pockets are filled.
Hers with the joy of the journey home, the wind and the rain are her elements, mine bursting with the lightest of finds.
Five genuine smiles given to her by five strangers, as they hurried by on this dreariest of winter days, handing out free stuff worth ten times its weight in gold.
Five of the kindest, ordinary faces giving a moment to honour her, not to pity her (we don’t collect those), recognising then marvelling at the treasure she always carries.
And reminding me, all over again, of the utter privilege that is every day caring for her.

“A twinkle in the eye means joy in the heart, and good news makes you feel as fit as a fiddle….“

Proverbs 15 verse 30, The Message


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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.