#Curriculum, #Teaching&Learning, Early Career Framework, Parenting, SEND

Meeting Jonathan!

By Anita Devi

Last month, I had the absolute privilege of meeting Jonathan Bryan !!! I’d been following Jonathan’s story for awhile on Twitter @eyecantalk and in the press.  I’d read his book, which I highly recommend, so I wanted to meet him and his mum, Chantal.  I had so many questions.

This blog is my attempt at summarising an incredible three hours spent with Jonathan, at his home.

Dual Multiple Exceptionality (DME)

My interest in children and young people, who had special educational needs and were more able started around 2007.  Working with different agencies including the National Association of Gifted Children (now Potential Plus), I was keen to find out how we identify and encourage the ‘ability’ in ‘disability.  I researched case studies from America (where DME is referred to as Twice Exceptional or 2E), I delivered a few presentations/ workshops and more importantly, I incorporated it into my practice as a SEN Advisory Teacher, undertaking statutory assessment. Around the same time, The National Strategies also launched their thinking around DME.  The discussion was beginning to develop momentum. We were starting to distinguish between identification and support strategies for those born with a disability, who had DME and those who had acquired a disability, after the more able aspect of their talent had been discovered e.g. Professor Stephen Hawking or Jean-Dominique Bauby (Diving Bell and the Butterfly).  Three years on and post-election, the signs in Whitehall had changed, as had the government agenda for education.  DME was put on the back burner.

Despite this setback, I continued to research the subject.  My interest homed in particularly on assessment, especially since ‘Life without Levels’ and the Engagement Profile / Scale research by Barry Carpenter and his team, was a great opportunity to further this discussion in special schools with head teachers.

Almost 10 years after I first started looking into DME, Pearson published a two-part blog by me on the subject.  The article was entitled, “What can’t my child excel and have a difficulty / disability at the same time?” Part 1 | Part 2.  Eighteen months later, nasen published their Current State of Play Report on DME.  Professor Stephen Hawking became a Patron of nasen, however as mentioned earlier, his was an acquired disability.  There is still much to discover about children born with a disability, who are cognitively able, but not always endowed with the ability to express it.

I do not want to give away too much about Jonathan’s story, as I really would encourage you to read his book.  Through ‘Eye Can Write‘, I met Chantal his mother, understood the circumstances leading up to his birth and the many difficulties they faced after he was born, including times when the hospital gave Jonathan hours to live.

Eyes Can Write

Jonathan is now 13 years old.  He has no voluntary control over his body or speech, and he is on an oxygen tank.  He has two younger sisters and a very busy schedule.  Jonathan was attending a school for children with Profound and Multiple Learning Difficulties (PMLD), when one of his teachers noticed active cognitive processing, behind his disability.  Long story short, Jonathan moved into mainstream, learnt to read, communicate in his own way and thrived.

Here is a reverse poem, he wrote recently for Poetry Day (21st March 2019).  Using the structure of an existing poem, Jonathan created his own, giving a voice to his thoughts and ideas.

Poem v2

So, what happened when I met Jonathan?

My first question was to Chantal.  Given all that has happened and the challenges, how is it you remain so calm?   Smilingly Chantal replied,

There are days, when the oxygen masks haven’t arrived or something else isn’t in place … and it can be overwhelming.  But I have a choice and I intentionally choose not to be angry.  It isn’t always easy, but the anger doesn’t solve anything.  If anything, it creates more problems.

Chantal, his home-teacher (Sarah) and I continued talking about many things … at which point Jonathan interrupted us.  Using his eyes, he spelt out the following message to me,

I just want an education system where we are all considered worthy to be taught and learn.  How can I make a difference, Anita?

Yes, he knew my name!  Part of my curiosity about Jonathan also stemmed from his phenomenal working memory.  Imagine using your eyes to point to a letter in a word, a word in a sentence, a sentence in a paragraph and a paragraph in a context/ chapter.  That’s what Jonathan had just done!

Reflecting on the discussion, I realised, we had been talking about provision in special schools and sensorial experiences.  Whilst these are necessary and helpful, Jonathan was trying to communicate to me … there is SO much more to us that just ‘experiencing’ a sensory stimulation or curriculum.

So, let me share some more golden nuggets, Jonathan spelt out to me, with his eyes:

I would love that if people see what is possible, maybe they will want to try and unlock others.

My story is not unique, and it should be shared.  I don’t have long here, so what should I spend my time doing?  I am a thirteen-year-old … and I’m always hungry!

I dream of every teacher finding ways to teach every child.

… and finally,

  • Trainee teachers need the why
  • Teachers need the how
  • Parents need the what
  • Leaders need to believe

What an incredible blueprint for teacher – leader development and the Early Career Framework.  I have no idea how the time passed … we covered so much.  But it was noon and Jonathan had to get ready for school.  As I drove away from their home … I was in awe.  This young thirteen-year-old had taught me SO much!  He had understood what we had discussed and responded in a way, that stretched our perceptions to a new level of thinking and believing.  What an absolute privilege! I was inspired and humbled.

JR Photo Medley v2

Jonathan and his family have set up a charity to focus exactly on what we spoke about, unlocking potential.  The charity is called ‘Teach us too’ and the remit is simply ‘to change the experiences of others in a similar position’.  There are some great plans for the charity to develop over the next year and #TeamADL very much look forward to walking alongside Jonathan and the charity in advocating the message “Teach us Too”.

Call to action:

Think about the children and young people you teach:

  • Are there any who have a special educational need and/or disability AND are more able?
  • What further research do you need to undertake about DME?
  • Does you setting have a policy and more importantly provision in place to ‘unlock’ and support DME?

 

About Anita Devi

Anita has had an extensive career in education.  Her why is based around the ‘joy of learning’.  As such, she focuses on what enables learners and what hinders them and more importantly, what can she do to improve the system.  Amongst many other roles, Anita leads #TeamADL

To find out more visit www.AnitaDevi.com

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