Downright Joy

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


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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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Clouds

I take off your glasses and wipe away today’s pursuits.

Stratus make way for cumulus.

Your vision always so clouded, yet you look up to search my distracted eyes and smile into them.

I take off your shoes and remove the plastic orthotics that cage your hot, sweaty feet.

I remove your socks to change them and, momentarily, your feet are free.

Your mobility dependent on these devices. Always and forever.

I’d offer you a drink of water but you have not learnt to take it. So you play with the syringe plunger as I tube feed you, directly into your stomach. How remarkable a thing that is – life!

Nine and a half years of it.

Taking your weight, I lower you to the floor to change you; imagining the equipment we will one day be gifted, (for it will be a gift), to do this with dignity.

You smile.

Probably the same smile you gave the person who did this for you at school today.

Clouds are extraordinary.


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Songbird

bird in cage

I know why the caged bird sings is a book that profoundly moved me when I first read it years ago. The author, Maya Angelou, vividly recounts her childhood against a backdrop of racism, discrimination and poverty.  A book filled with moments of joyous discovery weaved into and through a history lesson on brutality.

I’ve been re-reading it again recently.  I say recently, but it’s taken me over a year and I still haven’t finished. Not for want of trying – I’ve quite an impressive stack of literature next to my bed; but for the fact that the moment my head hits the pillow I’m gone.

As a parent and carer to two children with a range of both complex medical needs and disabilities between them; Autism, Down’s syndrome, Dyspraxia (let’s just say the list of conditions at the top of our hospital letters takes up most of the page) – reading for leisure, in fact most kinds of leisure tend to take a back seat. Sleep is more of a priority as it can often be in short supply. Tube feeding my child every night tends to cut across most socially acceptable leisure pursuits at the best of times.

(She’s worth it of course, of that I have no doubts. They both are).

Therefore, a trip to the hairdressers every eight or nine weeks or so is something I guard jealously. A self-indulgent hour and a half that serves also as an opportunity to read.

Maya Angelou comes with me. She sits beside me in the salon. She laughs in the mirror and tells me her tales. That laugh. From her belly. Gets me every time.

My hairdresser is too polite to mention that I am still reading the same book as last time, and the time before and the time before that.

Last week, chapter twenty five was waiting for me. Three quarters of the way through. I looked forward to Friday and my appointment.

Chapter twenty five is still waiting for me. Like everyone else in the nation, no, the world pretty much….a haircut now has to wait. Appointment cancelled. Salon closed. It’s on hold.

Everything is on hold. In some way and to some degree.

And, for families like mine, it’s vital support systems that have been put on hold. Systems we have fought for, prayed for, cried for, pleaded for. Systems we have celebrated gaining access to: education, healthcare, social activities for the disabled, respite for carers and much more. Support systems gifted to us by the kindness and dedication of numerous volunteers. Families, like mine, suddenly find themselves without these vital networks. More than that, they watch in disbelief as people panic buy medical supplies such as gloves and clinical wipes – items we rely on for daily life, regardless of a pandemic, are now in short supply. Respite centres close, lifelines are cut off. And though the world moves online; excellent programmes and meetings are created and made available to those who now have lots of time on their hands, these are much less accessible to families like mine. These families wonder how on earth they will cope. I wonder that too.

Then I remember Maya.

I remember thankfulness. I remember beauty in hard places. I remember to live one day at a time. I remember to not worry about tomorrow for tomorrow will have enough worries of its own.

I look at my daughter who has Down’s syndrome. She is non-verbal,  yet she tells me all I need to hear, loud and clear.

She tells me that there is joy to be found in the waiting, in the confusion and in the uncertainty. In the now.

She loves her life. Her school, the farm she visits, the lambs she strokes, her home, the park, the shops, her beads and ribbons, Granny & Grandad’s house….

She has no idea why she cannot go much beyond her back garden at the moment. She is confused. Sometimes she is upset. Yet she searches out joy and brings it to me in some small, gigantic way every day. Today it was in a belly laugh. A bit like Maya’s. From deep within yet at what? I have no idea.

Hardship is, well, hard, yet it does not have to be devoid of joy.

Our lives are not really on hold, even on the hardest of days when there is no respite to be found. Even then, I have found there are always reasons to be thankful, always opportunities for joy.  My daughter with Down’s syndrome eloquently tells me so.

And I remember Maya. And I think I might know, a least a little bit, why the caged bird sings.

 

And Still I Rise – Maya Angelou

Maya Angelou