Downright Joy

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


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Beautiful Brilliance

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Our week, almost at an end, has been spent in a lodge, beside the most beautiful, tranquil lake in the heart of the Devon countryside. After a hectic and very emotional end of term as my daughter moves on from her beloved school to new beginnings, a few days to simply stop, breathe and clear the lump in my throat was just what I needed.

The local heron, ever present with its majestic flight up and over the trees, alighting daily on the bank for a spot of sentinel feeding. Moorhens and their young, swimming like dancing Egyptians back and forth. And swifts. So many swifts. Appearing out of nowhere, feathered fighter pilots storming the sky above the lake, feasting on the myriad insects gathered there.

But one particular lakeside dweller has, all week, evaded me. The Kingfisher. That most visually eloquent yet elusive of birds. Despite my constant attempts to spot it, I have failed. Until just now.

I’d done all the right things…got up early to catch it feeding, hidden myself behind the trees so as not to scare it. And I’d prayed…as I often do. Nothing.

So, today, after my early morning trek around the lake to find it, I sat down outside the lodge and admitted defeat. Perhaps it was nesting elsewhere this year. I prayed a final but very grumpy prayer. Please let me catch a glimpse.

Seconds later, and I mean seconds, I saw it. Unmistakable flash of brilliant blue and orange streaking across the far side of the lake. I’d seen it. That was enough for me. I was happy. But there was more. Much more. A pair of Kingfishers darted here and there, right in front of me. An acrobatic air show of the finest order.

And I realised something. This visual feast, this Kingly display had been there all the time. I just needed to stop looking so hard in one area, for what I wanted to see, but open my eyes to the entire landscape.

In the Down’s syndrome community, and in life, it’s easy to feel pressure to see faster progress in your child’s development. Milestones that should be reached and ticked off an imaginary list. Sitting up, standing, walking, talking, or even toileting. And when our children can’t or don’t reach these milestones when we thought they would it’s so easy to feel discouraged. That we must be doing something wrong. That it’s our fault. That’s not to say we don’t push for them or encourage them to reach their full potential. But what is potential?

My child may not be able to walk very far and she doesn’t have many words. She is not yet able to fully feed by herself and is reliant on a feeding tube. Yet her potential is being realised every single day regardless of these so called limitations, or unmet milestones. Every day she shows love, joy and compassion to those around her. Every day she breathes life into our environment with her laughter and her sense of humour. Every day her life, her very existence, reminds us to give thanks for the transformation she has brought into our lives. Her sister’s life – enriched beyond measure as she instinctively and lovingly cares for and delights in the adoration of her sibling. The richness to be found in a person with Down’s syndrome, and that can be found in her too, is incomparable.

Whatever this world has in store for her life, however good, will never be able to equal what she has stored up and brought into our world. It’s a sadness to me that so many people won’t even catch a glimpse of this beauty, this brilliance in so many people with Down’s syndrome. So focused are they on achieving their goals they believe the lie that society has told them – that Down’s syndrome is a risk to their dreams and successes and must be dealt with – the earlier the better, preferably before they are even born. Brilliance not even given the opportunity to be seen.

I want brilliance in my life. And not just inspirational glimpses. I want more.

I have it thanks to my child with an extra chromosome.

Beautiful brilliance.

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Cheers

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I have a nostalgia for certain 80s & 90s American TV sitcoms. The moment I hear the opening few bars to, say, Cheers, for example, my mood lifts, however I’m feeling at the time.

Set in a bar in a Boston, the regulars and the workers all share their lives and experiences with each other. The highs, the lows; the trials, the triumphs. If, like me, you stayed the course of 11 years and 275 episodes, you got to know and love each character. The bar, the decor, the stories, the romances, the heartaches, the people. That theme song:

Sometimes you want to go

Where everybody knows your name

And they’re always glad you came…..

I felt sad the day Cheers ended. Of course it had to end. Everyone was getting older for one thing. Nothing stays the same. Life moves on. Still, I was sad.

This week, my daughter, Hazel, moves on from the only school she’s ever known. She’s been there nearly eight years; since she was two months old.

It’s her school but to us it’s so much more. It’s a place that has not only nurtured, cared for and educated her but us too. A family centred school.

It’s the place that scooped us up and surrounded us with support in those early, traumatic days when she was a poorly baby. The days when we struggled to come to terms with her diagnosis of Down’s syndrome and of what we mistakenly thought that meant for her future, for our future. I was very focused on that diagnosis back then. Unhealthily so. Hazel’s school is the place where I learnt that her diagnosis was not nearly as important as I first thought. It’s the place that helped us find, adjust to and embrace a new ‘normal’ in the midst of all the uncertainty and upheaval that we were facing. It’s the place where I found hope for a new kind of future; a joy-filled one.

A practitioner from the school came to visit us when Hazel was around nine weeks old – barely just home from the hospital NICU – to invite us to join their baby group. At that point I was still in a state of shock and unprepared to be thrust into a world of disability and special needs, let alone special schools. I remember asking her about the other children in the group. What were their diagnoses? What did they have? What was wrong with them? And though I may not have used those exact words, it’s what I was thinking. I’m so ashamed of those questions now.

Her upbeat answer surprised me: Oh, I don’t know!

Actually, I’m sure she did know, but the children’s conditions were not foremost in her mind. Their names, however, were. She knew them by their names. Harry, Ruby, Jacob, Louise*……children. Each with a name, not a diagnosis.

This school is a place where everybody knows your name.

And they’re always glad you came.

Mainstream education, or indeed society,  has much to learn from a school like this. There should really be no need for a policy on ‘inclusion’ when your starting point is the child’s name and not their disability.

This school is a place that has grown so familiar to us. It is our safe place. Our refuge in the tougher times when we’ve needed a shoulder to cry on. Our happy place when there has been so much to celebrate. A place where many new friends have been made.

So many joy-filled days.

Treasured memories.

Hazel’s happy place.

And as we now must say goodbye to this beautiful, caring, extraordinary, award winning school, we are sad; though we know it is time for Hazel to move on.  We are filled with gratitude for Hazel’s teachers, therapists and support staff; past and present. Whenever I see the word excellence I think of them. People who continually go above and beyond their official duties and who are, without doubt, the reason my tube fed, disabled daughter can now walk a few steps or even eat some actual food. People who have crafted and shaped a hope-filled future for Hazel. People who care deeply about all the children in their school and who constantly look for ways to bring out their full potential.

I love how Stephen Kelly, writing about Cheers in the Guardian in 2018 puts it,

 “Cheers, after all, always knew how to recover from setbacks. It was sturdy, consistent, familiar – a place where everybody knows your name.”

Thank you to every single person at Hazel’s exceptionally special school.

We’re so very glad we came.

“Every child, every person needs to know that they are a source of joy; every child, every person, needs to be celebrated. Only when all of our weaknesses are accepted as part of our humanity can our negative, broken self-images be transformed.” 
― Jean Vanier, Becoming Human

*Names changed for privacy.