Second Chance Meeting

Sometimes, before I could spell everything I wanted to say, I would meet someone in a one-off situation and be frustrated by my inability to chat with them; relying instead on looking them in the eye and smiling.  In September 2014, six months prior to spelling, I met one such person.  Here we are at the time:

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Never did I dream that I would get an opportunity to meet the Archbishop of Canterbury again.  But, yesterday, I was invited to Lambeth Palace for a glorious late afternoon meeting, and was able to have an interesting and in-depth discussion with the Archbishop about a range of topics close to my heart.  More wonderful still, all my family could come with me.

Joining the community for evening prayer in the Crypt was a beautiful end to an awesome day.

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Maundy Thursday

In preparation for Easter this year, I have spent some time immersing myself in some of the events of Maundy Thursday, and here is my first attempt at a sonnet.  Easter’s joy is all the more poignant having entered the darkness proceeding it.

 

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!

© Jonathan Bryan

 

 

 

 

 

 

Shine a Light Award

What a day I had yesterday!  Travelling up to London on the train, we made our way to the impressive Strand offices of Pearson Clinical, which has an awesome panoramic view of London’s Thames landmarks. My hopes were also set high as I had been shortlisted for the Young Person of the Year at the Shine a Light Awards 2018.  Receiving the award from 2 previous winners, Gregor Gilmour and Jonathan Middleditch, was a great honour.  To have my work with my Teach Us Too campaign recognised by people in the field of speech and language therapy and education, feels like an endorsement of all I am trying to achieve for children yoked with labels that suffocate their learning.  

During the ceremony, a film was shared which was recorded at my school a few weeks ago.  As you will see below I have been blessed with an amazing bunch of friends.

 

The wait is over!

Overwhelmed by the response to the CBBC My Life Documentary, I want to thank the people who have contacted me and continue to support my campaign.

How did you watch it?  I gathered my friends and we cobbled together a big screen in the playroom.  Jollity filled the air and we whooped every time someone in the room appeared on the screen, and hollered ‘he’s 12’ every time the film said I was 10! To round off a perfect evening, my sisters made me a wonderful chocolate cake.

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Don’t worry if you missed it, as it can be seen on iplayer for the next 28 days.

 

 


 

My Life Programme

Remember, remember the 5th… of February (it started well!)  Put the kettle on and sit down to watch CBBC at 5:30pm.  Filmed in November and December 2016, the crew followed me through confirmation, meeting the minister and spending time with Michael Morpurgo.  Watch the foretaste of the series below.  Enjoy!

Christmas Letter from the Desk of Jonathan

In September I started at Malmesbury Secondary School, where I am studying English, maths and science on a reduced timetable. Although I was very nervous when I began, I needn’t have been – I have made a great set of new friends, been accepted by the school community and love learning new things with inspiring teachers.

In the meantime my campaign for all children to be taught to read and write regardless of their label has taken me to speak at conferences in Leeds and Manchester, and the House of Lords. Teach Us Too continues to grow, with more plans in 2018.

All of this has kept me busy this term, but the reason I haven’t written many blogs is… writing! Every spare writing moment has been spent completing my book, Eye Can Write, which is due to be published in July 2018.

Below is a short extract from my book:

‘There are a number of reasons Christmas is my favourite time of year – the first is a pragmatic one, my body doesn’t mind being cold but causes me a lot of stress when it gets too hot, so the winter climate is perfect. Secondly, it means Daddy-time – not the usual quarter of an hour snatched between bath time and his evening meetings, but real Daddy-time, long afternoons, fact-filled forays into books, the ipad and outings. But before we can have our Daddy, there is the real reason I love Christmas. Sometimes, heaven and earth seem so close, they almost touch each other. This for me is the ‘magic’ of Christmas, and it’s not only for us children to enjoy, for Jesus came for us all. When heaven draws close to earth, it affects people’s behaviour, making them jollier, more generous and gentler.’

Happy Christmas to you all!

Christmas cake 2017

Christmas cake made by me, decoration designed by Susannah, decorated by Susannah, Jemima and me, shortly to be eaten by us all!

Radio 2 Rocks

This morning, I was privileged to be invited by Chris Evans to watch his breakfast show. Rocking along to Shed Seven was like being privy to a private concert and Natalie Dormer is even prettier in person than on the screen. But, most of all I am grateful to Chris Evans for inviting me and doing a shout out for my blog,  my school and my sisters. Listen here: Chris Evans Breakfast Show (listen at 2 hours 52 minutes)

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On the Campaign Trail

Being a campaigner is fun and hard work in equal measure.  So far this week, I have co-presented at a Communication Matters conference in Leeds, been to a reception at the House of Lords and written this blog post on the train – and it’s only Tuesday!

As the youngest delegate at the conference, it was nerve-wracking presenting to about 40 professionals, parents and AAC (Augmentative and Alternative Communication) users; but when one of the audience says it is the best presentation, it makes the journey worthwhile.

When I started to spell everything I wanted to say, I never imagined that I would give a speech at the House of Lords.  But, thanks to the Diana Award, that is exactly what I have just done!  It was good to meet Penny Mordaunt, Minister of State for Disabled People, and make new connections for my campaign; and once again by inspired by the young people who are recognised by the Diana Award.

You can read my speech here:

 

I received the Legacy Award in recognition of my Teach Us Too campaign for all children to be taught to read and write regardless of their label.

It was an immense honour to receive this award remembering Princess Diana, who so often went out of her way to show solidarity with those society would rather forget about.

Her legacy award has given me a stronger platform on which I am a voice for the voiceless.  My dream is a special education system where academic competence is assumed, rather than assumptions about academic ability based on physical disability.  Unfortunately, current education policy is tipping the other way, with proposals from the Rochford Review that schools will no longer need to report to government on children labelled with Profound and Multiple Learning Difficulties (as I was).  This is against a backdrop where special schools are increasingly opting for non-subject specific learning, ie literacy teaching is no longer required.  This lack of accountability signals that the education of children like me is of very little importance.  Imagine Ofsted was abolished in mainstream education, because no-one really cared what children were taught in schools.  Yet this is what is happening to children like me in education.

If my mother hadn’t removed me from special school for a few hours a day to teach me to read and write I would not be able to write this for you today.  For a non-verbal child, learning to read and write is not just a life skill.  It unlocks our voice.  It gives us life in all its fullness.  I am not unique.  There are more children like me in special school who need an education system that believes they are worth teaching too.  Then my story of learning to write and communicate will not be so unique either.

I don’t have much time left, so I am asking you to get behind my campaign and use your influence to ensure there is accountability and aspiration for children who are often marginalised and judged.

My body is very weak, but my desire to make a difference for children like me is very strong.

With Diana’s legacy I am building my own.

 

Bravo for Body Boarding

Disability.  For me this is just a word that means I have to work harder to find ways around things.

So when I watch my sisters body boarding I am sure we can find a way for me to do it too.  Thankfully I am surrounded by family as determined as I am; so with my mother carrying the oxygen, my godfather carrying the body board and my parents between them carrying me, we parade down the beach.  Feeling the waves is exhilarating; riding the crest of nature’s force I experience a strong connection with our creator God.  And it’s fun.  Really fun.  When we make our way back to our spot on the beach, the adults tired and relieved I use my spelling board to say, “that was wonderful, let’s do it again tomorrow.”