Two weeks to go…

In exactly two weeks we are holding the inaugural Teach Us Too Study Day, and I am so excited that Marion Stanton will be sharing her expertise in teaching literacy to non-verbal children like me. Without Marion’s advice and belief in me I doubt I would be able to spell.

If you or someone you know would benefit from this day, please spread the word and reserve a free ticket on Eventbrite. But hurry there are only a few left.

Youngest Visiting Lecturer at Bath Spa

Yesterday I went with Teach Us Too to present a lecture at Bath Spa University, and apparently I am the youngest visiting lecturer that they have had! Always on the look out for new ways to share the message of Teach Us Too to audiences which may be in a position now or in the future to change the educational outcomes for children yoked with the pernicious label PMLD. Until all children are taught to read and write regardless of their educational label, I will continue as a voice for the voiceless.

3 presenters
mid flow

Swindon Literature Festival

On Saturday I was honoured to take part in the Swindon Spring Festival and share something of my love of writing.  Yet again, my wonderful sister Susannah read my words from a fully lit stage, but unlike anything I have done before my words were simultaneously translated into sign language. With a green room of my own and a special table to sign books as well as a very warm welcome we were made to feel like VIPs.

Installation and Collation

Until yesterday I thought that new boilers were installed and newspapers were collated, but last night both of these verbs happened to my father when he formally became the Archdeacon of Malmesbury in Bristol Cathedral. And what a wonderful occasion it was! Joined by family, friends, and supporters as well as a long procession of robed church leaders, we enjoyed sublime music from the choir and a sermon from Bishop Lee.

Standing at the lectern, very little of my Susannah could be seen behind the bronze eagle, but her command of the space and every word she read could be heard clearly at the back. So yesterday was my chance to sit and be proud of both my father and my sister.

Happy family
My Susannah

A Dog at Last!

A few months ago I wrote this pantoum poem in anticipation of the imminent arrival of a dog to join our family. 

Sadly, that dog didn’t work out, and since then it has been a tortuous wait for another dog… but Diego, our golden retriever, has been totally worth hanging on for.  With the softest fur imaginable and big adoring eyes, he is the best companion I could have wished for.  Outside he cavorts with my sisters in the garden, inside he cuddles me.  So, here he is; Diego Bryan, the furry full stop at the end of our family: we are complete!

In the bluebell woods
Cuddles at bedtime

Re:Verse Poetry For Holy Week

Last night I was honoured to be invited to Malmesbury Abbey to take part in a poetry evening. This gave me the opportunity to share some of my poems alongside several other local poets. And what a wonderful evening it was.  Here is what I shared:

Over the last few years I have written a poem a year as a meditation on a different part of the Easter story.  For each poem I have tried to immerse myself into the scene and capture with words something of the experience, both the visual and emotional impact.  My journey through Holy Week will be read by different voices, I hope you find the experience enlightening. 

 

Palm Sunday

Hurrying, requesting, untying,

Crowds jostling, pressing and vying,

Spreading, smoothing coats, uplifting King,

Gates closed. Pause. Waiting to be let in.

 

Expectant hush for radiant bride,

Sun pours forth Son, doors flung open wide,

Shouts of jubilant acclamation,

City’s stones reverberation.

 

Majesty clothed in humility,

Shouldering peace for humanity,

Enraptured children weaving the crowd,

Spirits bursting with fresh praise aloud.

 

Vibrant coats flourished, palm branches danced,

Here is our longed for Lord at last,

Black blots conniving in the corner,

Reminding: it is not yet finished.

 

Maundy Thursday

How can my master be my servant too?

Stooping, untying sandals caked with grime,

In tender strength his hands my feet renew,

His garment white is soiled in drying mine,

With laughter, celebrations fill the air,

Punctuated by sombre lifted cup,

Imbued new meaning to salvation share,

Away stole stealthy satan covered up,

He breaks, dividing bread the mystery,

Off’ring redemption’s sacrifice for all,

Into the darkness, hymns from slavery,

Up mount we climb in silence of nightfall,

Shall I my master all in this deny?

The rest may go, but surely Lord, not I!

 

Jesus’ Beckon

Part 1 – Death Friday

Hounded, helpless, horror uphill,

Mocking jeers crescendo,

Death’s stench, dark in despairing dread,

Oppressing fear’s echo.

 

Piercing soulful eyes fixated,

Excruciating pain,

Hope hanging, subsiding, drowning,

Dignity dies, my shame.

 

Part 2 – Life Sunday

Night’s black breaking: light’s dawn dancing,

Hurry quickening feet,

Heady spices; heavy grieving,

Overwhelmed – crumpled heap.

 

Erupting anguish obscuring

Gardener’s playful delight,

Agony’s deep yearning, aching,

Recognition ignites!

 

Exploding joyful elation,

Spirit’s music exclaims,

Touching, soaring – soul suspended,

Jesus beckons my name!


Three Upcoming Events

In the next few months there are three events I am involved with:

On April 15th I will be taking part in re:Verse at Malmesbury Abbey and contemplating life and spirituality with other local poets.  Come and join us for this free evening (ticketed to monitor numbers and available from events@malmesburyabbey.com)

On 11th May I will be talking about writing and my book at the Swindon Spring Festival.  Details, including how to book can be found here

Many people contact me and Teach Us Too asking for advice about how to teach their non-verbal children to read and write, and it is therefore with great excitement I can let everyone know that Teach Us Too are hosting an AAC and Literacy Study Day with Marion Stanton on 5th June.  

Without Marion’s support, knowledge and advice to my mother I would not now be able to read and write. As an expert in the field of AAC and literacy this free study day is not to be missed.  Register for your free ticket on Eventbrite.    

Testimony Talk at Monkton Combe

Last night I was invited to Monkton Combe School to give my testimony to God’s goodness as part of the theodicy discussions the pupils had studied in lessons. Thankfully I didn’t need to understand the philosophical arguments, just talk from my experience.

The welcome was warm and the ensuing question and answer session invigorating. Below is a copy of what I shared.

Why do you think God gave you this condition?  Before the interviewer had sent me that question I had never considered the problem of evil as an issue; never before thought of this from a personal perspective; never been asked outright a question which brought such a force of emotion from me.  Writing out my answer that day was an immediate response to what felt like an impertinent question in a social interview situation: Why do you think God gives out illness? God is good and illness was never part of His plan.  But illness is not a barrier to God having a plan for you.

When we were contacted by Monkton I chose to look at this issue again, and this evening it is a privilege to consider this in an academic setting and to be asked to talk about this from my personal experience. And for all his impudence, the interviewer asked me a question I think many must think when they look at my dysfunctional body.  But I have always known God with me, sustaining me through difficult times and sharing the good times too.  Hospital can be a scary, lonely place with doctors and nurses doing their best whilst you all know that bodies like mine are fundamentally unfixable.  But when the medics leave the room and my mother pops out for a bite to eat, I am not alone and I am not scared. When you are all alone and immobile you are left with your mind yourself; and I discovered shortly after I began to spell that many people think with an internal monologue.  I don’t.  For all my campaigning for literacy I find that words restrict my thinking and confine it to the constraints of language, it was a complete revelation to me that people think using words in their head.  My thinking is made up of colour, emotion and drumbeats.  From a young age I have been aware of God’s presence with me, and I have invited that presence into my life to inhabit the landscape of my mind, the rhythm of my existence, the emotions of my soul. Time and again he has replaced the natural human emotion of fear with peace and love. 

So, the problem of evil would ask me: if God is so loving and powerful why doesn’t he heal you? Who are we to fathom the mysteries of God’s ways?  In my experience sometimes he has healed me and at other times he hasn’t.  Many times I have asked him for healing from respiratory illnesses and have recovered, recently I have been asking for healing of my head wound and I am still waiting for that one to be answered.  But true healing is open to us all, because we are all dying from the sickness of sin and Jesus offers us forgiveness and eternal life.  In my darkest moments it is that assurance of eternal life that keeps me going, because sickness and death do not have the last word on my life, God does.  And for me the promise of eternal life is not just a theoretical one, but rooted in an experience I had when I was younger.

Describing what is beyond description is almost impossible. How I got there? I do not remember. However, my memory of my time there is as crystal clear as if I had visited yesterday. Since sharing this part of my story, my parents have been helping me understand the events around my experience. When an intensive care consultant tells you that your child is being put into an induced coma in order for the ventilator to work as best it can, you know it is serious.

But when you enter intensive care and find every consultant and doctor on the ward in your child’s room telling you that it could go either way, you know this could be it. While my body hung in the balance, I was already tasting what it was like on the other side.

Alive. I had never felt so alive. Free from my crippled, dysfunctional body, I ran. Ran! Fresh, verdant grass beneath my supple feet. A warm, soft breeze caressed my face. Sounds of children’s laughter mingled with birdsong. Freedom!

For the first time, I could see clearly – like the murkiness had been blown away to reveal abundant meadows of spring flowers swaying their heads under the mellow sunlight. As I stretched my body to its full height (my scoliosis had elongated and vanished altogether), I realised the dragon cerebral palsy had been banished from the lair of my body. All my life this monster had subjugated my body to painful spasms, distorting and writhing my frame, breathing fire under my skin, stealing my voice; and now it was dead and defeated forever! With the sibilance of my oxygen silenced, I inhaled deeply, the fresh air vitalising my new body and filling my soul with joy. Swinging my free arms, I sauntered through an orchard; the trees, laden with delectable fruit, stretched beckoning branches towards me.

Savouring every moment, enjoying the harmony between my perfect, new body and my soul, I was whole. Groups of children were playing near the trees, their mellifluous voices drawing me closer. Happiness was not merely a facial expression for the people I met; joy exuded from them, and the atmosphere was saturated in a deep, contented peace. As I neared them, I wanted to ask where I was. And I could! I just thought it and spoke.

‘Jesus’ garden.’ The melodic reply danced in my soul.

And that’s when I saw him: Noah, my beautiful friend who had died the year before from a brain tumour. Although Noah was a few years younger than me, I had cuddled him as a baby and played with him as a toddler, at his house, at my house and in church. Adored by those who knew him and treasured by his young mother, his sudden illness and rapid decline had shaken our community and devastated his family.

Capturing in words those moments of reunion is so hard, but as the time drew on, I was aware that I had a choice to make. Either I could stay to meet the gardener, my author, my saviour; or I could go back. Back to my fragile, sick body; back to my mind trapped in my silence; back to the family I loved.

‘Jonathan.’ My mother’s voice called me from beyond the garden, and my decision was made.

That decision was the hardest of my life, but it has also shaped my perspective on life since. While my soul longs to live in the garden forever, my heart is torn between my family and the garden, but with Jesus’ presence helping me here, I know I can endure my limiting body for longer. My experience in the garden has given me a zest for life here and a zeal for life there. 

Knowing this life is not the end gives me an eternal perspective on anything that is difficult now.

So, what of now?  Believing in the omnipotence, omnibenevolence and omniscience of God is one thing, but what difference does it make here and now whilst my body is not healed and the promises of the garden are not yet realised?  Wonderfully, God has a purpose for my life in spite of my limited body, God can use even me and not just in spite of my limitations, but because of them.  As a non-verbal child I can campaign from a point of experience for non-verbal children who do not yet have a voice and who are not taught to read and write: a voice for the voiceless.

In the summer half term of 2016 I was very ill and looking forward to being in the garden forever.  As I was recovering I felt annoyed with God but very quickly questions turned into prayers, and prayers turned into answers. Time is given as a gift, and gifts should be received with gratitude.

I had been given the extra time so that I could use my voice to make a difference for the voiceless.  So I started a campaign for all children to be taught to read and write regardless of their educational label, and ended up being given the chance to share this message with the media and general public, as well as the minister responsible for children with special needs.

If God gave me one thing that I could choose to be healed it would be my voice; then I could say whatever I want whenever I want.  But, wonderfully God has used my slow communication with great power; when I use my spelling board to type out letter by letter people listen – with intent.  This enables me to be as effective as I can, with this call also comes great responsibility. For as long as I am able I will continue to try to make a difference: writing a book, setting up a charity to receive my royalties from the book, talking to trainee teachers, delivering speeches at conferences. 

The campaign I founded in 2016 has continued to gain in number of signatures, but last year it became obvious it has also become more than a petition; with an increasing number of parents and teachers approaching me for advice about how to teach their children to read and write.  So last summer I launched Teach Us Too as a charity to spread my message further and to promote and support literacy teaching to all.  One of the biggest challenges are the assumptions made about pupils based on their outward disabilities, these attitudes are also the hardest to overcome.  Even having written a book, some people still talk to me like a preverbal toddler!  

To sum up I reconcile my faith in a good loving and powerful God because he is with me and loves me; Jesus’ garden provides me with complete healing and He has a purpose and plan for my life now.

To finish I would like to share the testimony which I wrote for my confirmation:

With Jesus as my saviour, companion and friend, I have lived my hours here with happiness in my spirit and content calm in my soul. Knowing He is with me; cradling me in pain, sheltering me from darkness and beckoning me forward, has given me the strength and serenity to look life in the eye and smile. Like the constancy of the second hand of a clock, Jesus inhabits the quaver beats of my life; and as that beat slows, I look forward with excited anticipation to the day I will see Jesus; and live together with Him in His garden forever. In the meantime, I cleave to Jesus: my faith and my life.

Change_Makers

Being a Diana Award holder has been an amazing experience – from receiving my Legacy Award from the princes, to talking at the House of Lords.

And now the Diana Award have asked me to help them find the next Change_Makers. Do you know a Change_Maker? Find out more and nominate here.

Since I’ve been able to spell to communicate I have been trying to demonstrate that you can’t judge someone on their outward disabilities, and that whatever your circumstances you always have something to offer. Being a Change_Maker is a way to show the world that young people are not just the future, we are the answer to the present; we are not just the ones who need teaching, we bring fresh perspectives on old issues; we are not just to be tolerated, we can demonstrate new ways to embrace difference. As Change-makers we build a brighter future today.

read more on the blog post I wrote for the Diana Award