‘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.
While I am still trapped in my body here I want to be involved in decisions about it. Before the days of my spelling board, every time we went to clinic, Mummy would talk to the doctors about me; what was wrong with me, courses of treatment and plans for the future. Between Dr Dudley and Mummy there is an encyclopaedic knowledge of my past and present medical history – I sometimes imagine a gameshow with them pitted against each other on the specialist subject, ‘Jonathan Bryan’. It is a very close contest!
Together Dr Dudley and my parents have inhabited some difficult places, and navigated some tricky paths, holding and balancing my quality of life and my prognosis. Now I can ask the questions directly. My favourite questions now in the various clinics I attend are: ‘Will I get better?’ and ‘How long have I got?’ Some consultants find the questions from the child in the wheelchair a bit disarming, but I enjoy watching their barely disguised shock and listening to their measured responses.
Most of all, I can now add my voice to plans for the future, and when I talk, people seem to listen. So, I have told medical professionals how I want to go and where I want to be; for while going is exciting for me, how I get there is not something I look forward to. Meeting with the palliative care consultant, I have also chatted about what a worn-out body looks and feels like. Apparently, most people find that food is not important to them at the end, but I made sure it was given a top priority in my plan. At the end of the day, I am still a hungry 12-year-old boy!
All my life, people have done things for me. I am washed, dressed, fed via a tube and wheeled around. Now I have found my voice, I want to use it to help other people. Before I could talk, Mummy would have listed baking as one of the things I liked doing occasionally. She was in for a shock.
‘I want to bake every day.’ Sometimes using my spelling board is so satisfying.
‘That’s nice, darling.’ Mummy was enjoying our conversations as much as me. ‘Every day for a week?’
Frowning, I looked at the ‘no’ sign.
‘Every day for a month?’ Mummy’s voice was rising in panic; baking takes time and energy, and with three small children, time and energy are in short supply.
‘Every day forever.’
Thus started a chain of events that led to me getting a bread maker for my birthday. My best present ever.
Home baking has the power to make people extraordinarily happy. And now my baking can spread that joy too. While I still need help to weigh the ingredients, and many kitchen tasks need to be performed with Mummy’s hand over mine, I can now use my spelling board to direct how much goes in and when. Sometimes you hit on a recipe that becomes your baking signature. Mine is brownies.
Jonathan’s Brownies
These chocolate brownies have become known as ‘Jonathan’s brownies’. I didn’t invent the recipe but I have made them for family, friends and as presents for teachers more than any other recipe. With a delicious melt-in-the-mouth richness, some people who know me are prepared to buy this book for the brownie recipe alone! My sisters say they can taste the love with which I make them.
Ingredients
10 oz / 275g butter
13 oz / 375g caster sugar *
4 eggs
1 tsp baking powder
3 oz / 75g cocoa *
4 oz / 100g plain flour
1 packet of cooking chocolate drops *
*These ingredients could be Fairtrade, something I am passionate about supporting.
Method
•Line a deep-sided, well-greased roasting tin with baking parchment, and preheat the oven to gas mark 3 / 160°C / fan 140°C.
•Cream the butter and sugar in the food processor.
•Add all the rest of the ingredients except the chocolate drops into the processor and mix well.
•Remove the blade and stir in the chocolate drops.
•Spoon the mixture into the roasting tin.
•Bake at gas mark 3 / 160°C / fan 140°C for about 12 minutes, making sure that the mixture doesn’t burn.
•Turn the heat down to gas mark 1 / 140°C / fan 120°C for about another 40 minutes until the top of the cake no longer wobbles, and a skewer comes out clean.
• Cut into pieces while warm, leave to cool before taking out.
Although I can’t eat the final products, the aroma of my brownies fills the kitchen, the house and my nose until I can almost taste them. But my greatest pleasure comes from giving them away and watching people’s expressions as they devour them, savouring every last crumb.
As well as baking, my spelling board gives me the freedom to tell my family about more surprising things I want to do. Perhaps one of the most unexpected things I have always wished to play with is Lego. Utilising my board, I can now not just ask for Lego, I can say what I want to construct and how. Lego has also given me a gateway to interact with my friends and we have even made stop-motion movie clips using the iPad.
Ever since I was four, I had been going to my local primary school for one afternoon a week, joining my peers for the afternoon session and attending the lesson with them. Despite a common belief about the indiscriminate blind acceptance of children, in my experience both children and adults can be divided: those who can connect with me, and those who can’t see past the physical barriers. Thankfully, I was blessed with solid, dependable friends at my primary school who connected with me and included me in their games. For them, my new way to spell everything I wanted to say was just another way for us to communicate; one method among many. We still went around the playground together, still had our secrets, still enjoyed each other’s company. Through my years of silence those friends had been my loyal companions; steady, true comrades through the maze of growing up.
However, for the other children my new ability brought a dramatic change of attitude in the classroom, because now I could join in. When I was part of a small group discussion, I was no longer the silent onlooker; when the class were asked a question, I now had a chance to contribute my answer. And friends at my primary school were getting good at using my spelling board. Now they could all pick it up for a quick yes or no answer from me, and one friend, Rochelle, even studied how my carers used it so that she could see what I was spelling. After a month of observing the spelling system, she became a communication partner too. At last I could chat to my friends without grownups around. Now I was not just chronologically in Year 4; I was academically in Year 4.
Before, it didn’t matter what lessons I joined my peers for, as the main purpose was always social interaction with children my own age. However, now I could communicate well and prove my learning, Mummy and Daddy asked the local school to consider increasing my time there from one to two afternoons a week. And they said yes! Not only that, but the teacher even moved the subjects around so that I could attend the more academic sessions.
If only we had felt that same level of jubilation at my special school. Or witnessed a fraction of the excitement. Or even a ‘Well done.’ Instead, everything continued in much the same way as it always had. Most frustratingly of all, it seemed to us that no one, except the one-to-one teaching assistant (TA) assigned to me, believed that I could spell using the alphabet board. Apparently it was less challenging for the special school to think that my mother, my five carers, Sarah (a primary school teacher), and their own employed TA were kidding themselves, than it was to explore the implications for me and the other eight children in the class, or indeed all the children who are mislabelled with profound and multiple learning difficulties.
When I looked at my friend Will, my heart was filled with a deep sadness; he had always been my special school academic partner, often overtaking me in his demonstrated learning; for his eye-pointing has been consistently clearer than mine. But now there was no satisfaction in being the first, no gratification in the top position, because suddenly, seemingly overnight, I had gone into a league of my own. On my own. Alone. And it was lonely and depressing watching the isolation of my friends, who had no independent way to communicate.
Instead they were mostly relying on facial expressions to make choices, either smiling as they heard the option they wanted, or choosing between two objects placed in front of them. Prior to spelling, my communication had been limited to this too. Before my eyes were discovered as the only part of my body that I could control, my private speech and language therapist set up a communication file for me to use. Everything in the file was categorised, and I had to smile as the category I wanted was read out. Smiling is not as quick or easy for me to control as my eyes; it takes effort and time and is unreliable. On average it took four smiles to arrive at a word. And often the exact word wasn’t there. And there were some things I didn’t feel like smiling for – for example, who wants to smile to say they have a headache? It was slow and so boring that after a certain number of smiles I gave up, even if I hadn’t chosen any words. But in its defence, at least someone was really trying to present me with the option of a bank of words I could choose from.
The key for me, and children like me, is to find out what we can independently control, and then use this as our access to the curriculum. I never had profound and multiple learning difficulties, but I did have profound and multiple difficulties in accessing learning. It should be that there is an expectation for all children to learn, regardless of their physical disability or label. When my access was in its infancy, numerous pieces of equipment and techniques were used, but when my eyes were my access, there was one machine which held out some hope for me – the eye-gaze machine. Patiently my private speech and language therapist tried out different models of eye-gaze machine with me, and eventually we seemed to find one that worked. But it was slow and inaccurate compared to my spelling board. Frustratingly inaccurate. In the end I suggested we chuck the eye-gaze machine out of the window.
Around this time Will got his own eye-gaze machine, but rather than seeing this as the beginning of an exciting communication and learning journey, it was viewed as the end. With an eye-gaze machine Will could choose from an array of pre-determined options with a picture and word underneath, rather like my communication file. For example, in the ‘feelings’ section of my file, I could choose ‘sad’, ‘bored’ or ‘angry’, but not ‘frustrated’, which is what using the file made me feel. If no one taught Will to read and write he would be stuck with those options – unless he was so intelligent that he could teach himself to read and write from the words under the pictures. You don’t suddenly start using an alphabet board – you have to be taught how to read and write first. Being able to spell words gives you the freedom to say exactly what you want. If special school takes the decision not to teach you to read and write, who will?
Meanwhile, my home education had morphed into a test centre. Unusually, for a child of my age, I love tests, particularly tests I need to think about a bit, and enjoy working out the answer. Before I started using the spelling board and my ability with numbers came to light, Sarah and Mummy were following a Year I syllabus; now they were trying to work out what academic year to teach me. Helpfully for me, the government set tests for the end of Year 2, and I had devoured them, getting good percentages. However, rather than move on to the Year 3 syllabus, it was decided that I should sit some Year 3 papers – but the novelty of tests was waning. Half a term later, I was sitting Year 4 exams, and not only had the initial excitement worn off completely, but I was increasingly irritated by the maths questions I couldn’t do, because I hadn’t covered the syllabus.
Armed with the marked papers for Year 4, Mummy went to visit the head of the special school. Surely now the significance of what had happened to me would penetrate the system?
‘These are impressive test results,’ concluded the head, ‘but until we see Jonathan use the board in school, we can’t do anything about it.’
Concurrently, I was in the corridor outside the office spelling to my school-employed teaching assistant, ‘My mother is seeing the head.’
While we felt that the special school was fundamentally not interested, numerous people in the communities I am part of became fascinated with my new abilities. One of them, an educational psychologist, volunteered her skills and arrived with the ultimate entertaining test: a cognitive assessment which Mummy told me was rather like an IQ test. Sitting on Mummy’s knee, I was presented with a line diagram, and after a few seconds the page was turned to reveal more line drawings, but only one was the same as on the previous page. Each option corresponded to a square on a Perspex board which I used to indicate my answer. Blessed with a photographic memory, I found the test an exciting challenge, and as it progressed in difficulty I started to get more right than Mummy, who would give her answer after I’d given mine.
‘And that’s the end of the test.’ The educational psychologist had a look of shocked amazement, but we had little idea as to the significance.
‘What age do the tests go up to?’ Mummy enquired.
‘This test is used for children up to the age of 18. I stop the test when the person taking it gets more than five wrong in each section. It is not often I finish the test.’
The results of this test were verified by the local council, who sent their own educational psychologist to do a different cognitive assessment. She reported that I scored on the 99th percentile for a child my age.
Following the tests, Mummy once again phoned various members of the extended family. I suspect by now they were getting used to conversations detailing my latest achievements. Reactions from those not in my immediate family were split into those who found it ‘unbelievable’, and those who ‘knew all along’ that my mind worked. Mostly, those in the latter category were people who have spent hours with me, often alone. But now I can join in. So when Gran plays a crossword game I can give my ‘penny’s worth’, and when she plays cribbage I am no longer the silent onlooker but a fiercely competitive player.
When we lived in our previous parish, a recently retired teacher took me out in my wheelchair to visit anyone who was old and lonely. Sitting on their doorstep, I would wave and smile and make their day a little brighter, before we moved on to the next house. I see this as a special God-given way I could give happiness back, enabled by a lady who always believed I was in there, always knew I understood and always loved me as I was.
Then there was my granny. Like the fifth emergency service, Grannie always had her little red suitcase packed and ready at the door. Prepared for every eventuality, her case filled with identical sets of navy-blue skirts and checked shirts, Grannie would arrive with willing hands for Mummy and Daddy and a warm, comforting cuddle for me. Long, glorious hours were spent nestling in my Grannie’s arms, enclosed in her loving acceptance. She was ‘not in the least bit surprised’ when I learnt to communicate using my spelling board, and as I’ve explained neither was almost anyone else who had spent large amounts of time wit
h me.
However, there was one notable exception to this rule: Grandpa. At six foot three, Grandpa’s large presence and personality fill the room; his deep voice resonates, satiating the atmosphere with gravitas. Never having encountered disability in his youth, Grandpa is scared, almost phobic, of it; so while I have never doubted his love for me, he has visibly struggled with my physical limitations, which had formed an impenetrable barrier to him getting to know me. Until now.
Before, when he met me, he would wave his hand vigorously in front of me, like a windscreen wiper, and say loudly and clearly, ‘Hello Jonathan,’ before turning to Mummy and asking, ‘He can hear me, can he darling?’
The irony is he’s quite deaf, and my hearing is better than his. Once I began to spell he was blown away by the abilities of his grandson, who he had previously thought of as unable to do anything. Even so, it took him a little while to adjust to the fact that I now spelt everything. So when he tried to disguise my birthday surprise by spelling it out to Mummy, I was laughing before she had even worked out the word.
As a linguist, Grandpa loves words, and now we can discuss them together, luxuriating in their diversity and richness, jointly finding the perfect match. For Grandpa, my use of a spelling board has been an epiphanic moment, and his company has become among the most stimulating for me.
Eye Can Write Page 7
