For most people, turning 18 is a chance to buy a pint in the pub and vote in the next election. For me, it’s meant monumental change. All paediatric services end when you legally become an adult,  so I’ve had to say goodbye to consultants who have known and cared for me all my life, and I need to navigate new systems for almost every part of my medical care.  This ranges from where different medication comes from, to which hospital I attend for different clinics, to the type of ventilator I use.  It has also impacted the services my sisters receive as they had to say goodbye to their sibling support worker at Julia’s House Hospice.  Every week in January it felt like we had to say goodbye to someone else.  But everyone I’ve met in adult services has been kind and competent, and I know I’m in good hands.

I am also being ‘restored’.  Sadly this is not a medical term for what is possible now I’m an adult, but a legal one.  Over two separate appointments with a clinical psychologist I had a capacity assessment and have been found to have capacity to make decisions about my affairs.  This too involves lots of change and a whole heap of responsibility.  I’m ready for it, but I’m also realising that being an adult is not as exciting as children think it is!

Turning 18 was an opportunity for a celebration not to be missed, and last week the notorious Gentlemen’s Club went on tour.  Of course in true Gentlemen’s Club style a pool contest was a must, sharing wise words and beer while getting competitive, a superb way to mark this milestone in my life.

Looking towards the future and immensely grateful for all who have helped me get this far, I strive for what lies ahead knowing Jesus will carry me on.

Today we are having a Service of Thanksgiving for my Grannie. She always thought of others before herself and for my childhood always had her red suitcase packed and ready to come and help. When she arrived the relief was palpable. She and I spent many hours sat together on the sofa, long after my siblings and cousins could walk away! I’ll miss her so this post is my dedication to her using the form I know and understand best – a poem.

Grannie

With her red suitcase full of navy skirts,
Carrying a cake, cheese and treacle tart,
A comforting cuddle to heal our hurts,
Our sorrow is great as she departs.

Her green fingers worked magic on roses,
And brought new life by re-potting our plants,
Dressing up as spaceman and air hostess
At our themed parties in young childhood past.

We’d press our ears up to her bedroom door,
The radio’s on so we’d all climb in,
Read books and listen to stories of war,
Or chat whilst she sewed more scout badges in.

So how will we cope without our Grannie?
The warmth and comfort she brought to our lives,
We wrap it tightly and in our hearts carry,
For Grannie’s with Jesus but her love survives.

This Christmas is going to feel sad for me and my family. In November my grannie was diagnosed as being in the latter stages of ovarian cancer, and on 12th December she died in a hospice. I love her very much and will miss her a lot. 

Every year I write a Christmas poem, and this year’s is for anyone else who is experiencing bereavement at the moment. 

What makes good inclusion? After a year as the only non-speaking wheelchair using pupil at a sixth form in a mainstream school, I have had time to reflect on what has made the year so successful.  This can be summed up in one word: access. 

Of course when most people hear the word access in relation to me they think of physical access; and going to school in a Grade 1 listed building, physical access has caused some need for thinking out of the box.  My lessons were moved to an accessible classroom and I can enter the main building via a restored ramp into the basement and up in the Victorian lift.  When not in lessons or the common room I have access to my own space to rest and study in.

But access is primarily an attitude.  Its about deciding people should be included before it happens, and planning accordingly.  For me this has meant teachers sharing material for lessons in advance, including questions I can spend time spelling answers to; joining a history of art course remotely because the evening timing didn’t work with my carer rota; and planning to attend a residential months before I joined the school.

Access is not just an attitude for others in relation to me it’s a mindset I have adopted as I’ve thrown myself into life in the sixth form.  Wherever I can I try to enter and sign up for opportunities, whether it’s taking part in the MacMillan run (pushed by a friend) or applying for a prefect position (I am in as equity, diversity and inclusion rep).  Along the way I’ve tried to have a laugh, inclusion shouldn’t all be serious! So I convinced my TA to give me a debit, which I composed with him; and I applied for sports leader prefect (see video below which got shown as the application process to the whole school).  

So what of next year?  I’m hopeful I can encourage my peers to pick up my spelling board a bit more, even for a yes or no.  And I’m planning to use my prefect position to shape a school where everyone feels valued and included.

Today is my turn to be proud. Proud of my mother who has today been officially recognised for the enormous contribution she has made, through Teach Us Too, to educational opportunities for children and young people, who might otherwise not be taught to read and write. And proud of Teach Us Too, the charity I conceived of, which like the vision that started it, has grown so much bigger than one boy’s story to make a difference for many others.

From the beginning of my literacy journey it was a combination of my mother’s determination, time and belief that enabled me to learn how to spell and thus find my voice. And when I said that I wanted to start campaigning for other children who aren’t taught to read and write, she not only got behind me, but also advocated in her own capacity.

And when I wrote my book she ended up writing hers too; without her introduction my story would be incomplete.

It’s taken much persuasion from me and the trustees of Teach Us Too to convince my mother that she should accept this honour; but I can honestly testify that, without her, none of what I have achieved or what Teach Us Too is achieving would be possible.

Last week I was honoured to hear my poem, Song of Voice, performed as a piece of beautiful music composed by Helen Kucharek and sung by Hannah Luddington in the chapel at school. Hannah’s voice is like crystal flowing water; the whole experience was sublime.

I once read that every artist has one piece that flows from their soul without much preparation or planning. On the day I wrote this poem my speech and language therapist had come and the room crackled with expectation. This has become my signature poem. Helen told me that composing this music was a similar experience.

Listen and enjoy!

During the holidays I was fortunate enough to visit the beautifully verdant island of Mauritius.  Located off the eastern coast of Madagascar, this impressive island is two-thirds the size of my home county, Wiltshire.

With its breath-taking imposing volcanic towers, deep luscious ravines, and unspoilt coastlines of white sands and turquoise waters, it is the embodiment of paradise!  Walking to the viewpoint to watch the Chamarel waterfall was the highlight for me.

Next my travels took me to Pompeii, to what is possibly one of the most notable of archaeological sites in the world. Once a thriving and sophisticated Roman city; now a ghost town encased in time.  Gliding through the streets like a shadow I received a personal guided tour of the main bath house, the bakery and a wealthy Roman’s house.

Confused?  What if I told you I visited both places within the space of a day, in my father’s study, wearing my heated slippers to stand on a tropical beach.   

In fact, the reality is that due to my complex health needs, physically venturing to all of these wonderful destinations is very medically challenging. That is where the wonders of technology have come to my aid in the form of a Virtual Reality (VR) headset.

If I should so choose, I could be meandering down the cobbled streets of Venice one minute and cascading down a white water river in Alaska the next.  With the ability to share what I see with a screen my family and I can experience places together.

Of course I’m not suggesting the headset is as good as visiting somewhere in person. This Easter I really went to the Lake District, where amongst other places I visited Dove Cottage, William Wordsworth’s house.  It was wonderful.  During lockdown I did a really interesting course on Wordsworth based at Dove Cottage over four weeks, so I wondered if it would be a let down going there in person.  It was not.  Sitting in his upstairs study and looking through a reference book from his bookshelf which my sister was allowed to hold, there was an atmosphere of simple creativity.  By the end of the day two members of our party had created writing of their own. 

VR is good, but if you can do go to different places yourself.  Send me an email of where you’ve been and I’ll go too in my VR headset.

Visiting Mauritius with VR in my father’s study and sitting in Wordsworth’s study at Dove Cottage