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 firstname.lastname@example.org)
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.
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.
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.
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.
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.
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!
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.
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.
garden.’ The melodic reply danced in my soul.
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.
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.
My mother’s voice called me from beyond the garden, and my decision was made.
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.
this life is not the end gives me an eternal perspective on anything that is
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.
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.
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.
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
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.
Recently I had the honour of writing a script for two videos to be shared with year 6 pupils and their teachers. In case they might be useful for anyone not at the PiXL conference, I have attached them below.
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
Books have been my escape, books have been my portal to another world, books are my passion and joy. Today I have a challenge for you: Can you describe your favourite book in five words and not include the title?
Here’s a book I enjoyed recently:
Nameless gradually perceiving pervasive secrets
Please leave your book below, and ideas about what mine is.
What a morning! As the sunlight poured 100 people into the radiant Abbey I felt the love and acceptance of those who had generously given up their morning to come and meet me. Many had already read my book, and I was particularly touched by the person who asked the first question and said she now sees people with disabilities differently – this is one of the reasons I wrote the book, and the other is elicited in the nub of her question: Jesus is the most important part of my life, and he can be in yours too.
Particularly humbling, some had travelled a long way for the morning including David the CBBC My Life film producer from London and the two ladies from Wales who had spent two hours following erroneous routes on the Sat Nav!
Judging the poems which have come in following the poetry work shop has been a tricky morning’s activity, with some penning their first poem and others rediscovering a lost love. Every one of them was a unique: an acrostic, a repeated refrain, even a limerick. Sadly, there wasn’t space for them all, so I chose two for the children’s section, two for the adult section (one about the Abbey and one about the morning) and a wonderful review of the event from Harry, who like me is in secondary school and has cerebral palsy.
Winners of the children’s section:
I like your face, its cute.
I like your poem
And I love your heart
(by Edward aged 7)
I love this place,
and I love coming
to meet you
(by Evie age 5)
Winner of the adult section – a poem about the Abbey
Is the generosity of the Love of God here made manifest
Granting even my request to live the life that He has blessed?
Winner of the adult section – a poem about the morning
Jonathan and William
Two authors, Two poets
From distant Eras
United by their teaching power
I’m hurrying, no surprise there!
Road closed, no way through
Coming to Abbey
To see, hear a beautiful intelligent mind.
A unique portal, published at 12
Not bound by his handicap
Not bound into his mind.
Oh such a beautiful, handsome young man to behold!
A hurried coffee and a yellow ripe banana
Hair wet and ready to go
Prayed for sunshine, it’s coming through
Daffodils clapping, oh Wordsworth
Would be happy
As we are to welcome this beautiful mind.
Harry’s review of the morning:
Meeting Jonathan and listening to his poems and his stories at Malmesbury was exciting because he really inspires me to do anything you want to do. When I got to the abbey, there was a beaming light shining through the colourful patterned stained glass windows coming from the sun and me and my mum then sat down. It was so exciting waiting for the show to start as I had been waiting for this trip for so long. Then it started…
From my seat, I could see Jonathan and his mum, Chantal. The show started with a lady at the front, saying thank you for coming. Then they showed us a video of Michael Morpurgo reading Jonathan’s book. At the end of the video, Michael asked some questions and cheeky Jonathan answered back with a cheeky answer!
Jonathan’s sister, Susannah, read a poem and then a friend of Jonathan’s, Andy acted out his story of Rumplestiltskin. The audience asked Jonathan some questions about his story and Andy showed us the way Jonathan plans his stories and poetry. Then the show ended and then Jonathan was going to sign our books! I went to the end of the line but it was taking a long time and so I talked to Andy for a bit. Finally I got to the front of the line, and I got a chance to talk to Jonathan and his mum. We talked about how Chantal told Jonathan about me being on the radio with Lost Voice Guy. Then he stamped my book and then I asked the all important question. “ Where do you get your ideas from?” Then he answered “ My mind”. Then we all chuckled, then we left. I left knowing that I had met one of my heroes!
Finally, the limerick made me laugh:
There is a young man called Jon,
Who uses big words with aplomb.
His unique writing board
And his love for his LORD,
Has led to the fan base he’s won!
Last night the CBBC programme about my life won Best Children’s Programme at the Broadcast Awards despite strong competition from the likes of Horrible Histories Series 7. If you missed My Life: Locked in Boy the first time round you can watch the programme via the Teach Us Too website here.
Special congratulations to David Metcalfe, the wonderful cameraman and director, who has also become a friend; and Lewis, now officially the best voiceover as well as the best friend.
Come and meet me, watch a video of Michael Morpurgo read an extract from my book and join a poetry workshop on Saturday 2nd March at 10.30am.
What is more, the event is free, the coffee shop will be open and I will be stamping books. You can even win a stamped copy by entering your poem from the workshop into the competition. What is there not to like?
For as long as I can remember I have wanted a dog; so when I started to spell, asking for a dog was one of the first elongated conversations I had with my parents. That was four years ago! Since then Susannah has joined me in a sustained campaign for a dog, which we have worked on together with increasing intensity.
Big events in my life get celebrated in poetry, and so I needed to find a poem to fit our campaign. Below is a pantoum which is a poem of any length, composed of four-line stanzas in which the second and fourth lines of each stanza serve as the first and third lines of the next stanza. The last line of a pantoum is often the same as the first. Always up for a challenge, my pantoum is dedicated to my fellow campaigner, Susannah.
In the Bible, Jesus tells the story of the persistent widow who goes on and on until she gets what she wants – dogged persistence delivers its dues.
Dogged persistence delivers its dues, The pattering of tiny feet suggested, No more babies? We need a dog – don’t refuse, Drip, drip, drip; slipped into conversation, requested.
The pattering of tiny feet suggested, The campaign of perseverance swelling, Drip, drip, drip; slipped into conversation, requested; The reasons rehearsed: our arguments compelling.
The campaign of perseverance swelling, Pitter, patter, pitter, patter: soon to be our news, The reasons rehearsed: our arguments compelling, Dogged persistence delivers its dues.
On Friday I attended the Oxford Brookes Inclusion Conference and shared my message of literacy for all, selling a lot of my books and leading a seminar with Mummy and Sarah for Teach Us Too. Nothing gives me greater joy than hearing teachers say they will look at the education of children with PMLD in a different light.
If you know of any good ways to get my message out then please leave a comment below or email Teach Us Too via their contact page.