‘Make it harder, and make it more fun,’ she said.
‘I suppose I have been doing the same sort of thing every day for the past two weeks,’ I confessed, as I reviewed the rather dry and unstimulating way I had been attempting to teach Jonathan. I was getting quite bored by it; I shouldn’t really be surprised that he was, too!
So, instead of paring the learning back, I increased the speed; and, with the help of some creative carers we made the reading exercises into a series of games and mini stories. It worked.
Meanwhile, Jonathan was not making the same progress at special school. The assessment tools they used at the time required him to achieve a tick in every box before moving on to the next level. Some of the ticks were for physical achievements, such as holding a pencil. Stephen Hawking would not have got very far with their assessment criteria! So, required to prove again and again that he recognised, for instance, numbers 1–5, Jonathan got bored and switched off. Jonathan’s then teacher and the teaching assistants were trying to do their best for the children in their class, but with limited resources and constrained by the assessment tool, they never saw Jonathan’s best. Lack of resources and school funding play their part in Jonathan’s story, but I believe the biggest barrier is a lack of expectation. Until the system hopes and expects that all children may be able to academically achieve, they won’t be able to.
Back at home, never again did I have the issue of Jonathan disengaging; and as I increased the pace he more than matched it with his abilities, so that by the end of that first year we had covered all the basics from reception and had moved onto Year I work.
Although Jonathan’s learning was progressing well, we were still working closely with his speech and language therapist to find a better way for him to communicate. One day, the therapist turned up with a book of choices with a list of contents that gave Jonathan his biggest range of words to choose from so far. For instance, he would choose the feelings menu by smiling when the word ‘feelings’ was read out, and then we would turn to that page for him to choose the feeling he wanted. In reality it took four or five choices to go from the menu to the right word.
He would often lose patience with the laborious menu system, and it got to the point where the file would come out and Jonathan would sigh and an almost instantaneous glazed ‘I am not going to engage with this process’ look would sweep across his face. It was so frustrating for us all. We all knew from Jonathan’s answers via the E-Tran Perspex frame that he could make choices, but as yet we hadn’t found a way for him to articulate his own voice.
Sadly, at the end of this first year of home education, despite our attempts to show the special school what Jonathan was achieving at home, Jonathan and his friend Will were moved back into a PMLD class, where the curriculum was largely sensory. This felt like a huge step backwards, as at home school the story was very different.
A month into my second year of teaching him at home, I was beginning to feel out of my depth. Home education had increased in hours to include most of the morning, and having covered the initial curriculum I now needed to plan for more challenging books, and a variety of different writing genres. On top of this I had no formal teacher training, and no expertise. Through a friend I met Sarah, a primary school teacher with two small children, who might have some time free to help me.
Entering Jonathan’s bedroom, which doubled as a school room during the morning, I was aware that I didn’t even know if Sarah had come across a child as severely disabled as Jonathan before. But I instantly liked her, and desperately wanted the meeting to work. Late October sun cast itself onto the floor where I sat with Jonathan on my knee, the brightness of the room reflecting my hopeful mood. Intending to demonstrate a typical morning’s lesson, I had arranged for one of Jonathan’s carers to hold the E-Tran frame. Extra work had gone into the preparation of the lesson that morning – here was a professional coming to see me and I was far too proud to show her just how much I needed help!
‘Open your eyes, Jonathan.’
It was the fifth time I had asked Jonathan to open his eyes, and it was becoming embarrassing. Since Sarah had arrived, Jonathan had refused to lift an eyelid… at all! Every attempt to encourage him to engage with Sarah was met with at most a flicker, or a sly grin. What would she think of us?
Eventually, I ran through a typical home education session as if Jonathan’s eyes had been open and he was demonstrating it, explaining the systems I had devised for him to read, write, spell and do maths. I showed her the Perspex E-Tran frame board and past lesson plans, demonstrating the multiple resources we had made, while all the time the voice in my head was shouting, ‘She must think you are the ultimate in a deluded mother!’
Since that day Jonathan has never again refused to open his eyes for a whole morning; he later told me it was his version of a test – to see if Sarah would believe me. Why on earth he thought this approach would be helpful, I have no idea, but it seemed that having a teacher who would get on with his mother was more important to him than showing her what he could do. Thankfully she did believe me, and to my utter amazement and relief, Sarah agreed to help with Jonathan’s home education. They got on well together, and what happened next amazed us all.
Chantal Bryan
CHAPTER ONE
Song of Silence
Numbness making sensory dead!
Inhibiting freedom, fearing change,
Sanity seeping sadly down,
Shutters closing, everyday night.
Ceasing hope, holding shame aloft,
Kept like wounded trapped birds caged inside,
Why should silence drown their spirit?
Who can free their souls’ aching sorrow?
CAN YOU IMAGINE NOT BEING ABLE TO SPEAK OR COMMUNICATE? The silence, the loneliness, the pain. Inside you disappear to magical places, but most of the time remain imprisoned within the isolation. Waiting, longing, hoping. Until someone realises your potential and discovers your key, so your unlocking can begin. Now you are free, flying like a wild bird in the open sky. A voice for the voiceless.
This is me, and this is my story.
Listening, looking and waiting to be heard, I spent the first part of my childhood unable to tell my story. In silence I lived behind the labels. Labels attached to my dysfunctional body. Severe cerebral palsy. Profound and multiple learning difficulties. Non-verbal. Chronic lung disease. Curved spine. Transplanted kidney. Hearing loss. Squint. Short stature. Deranged liver. Even my teeth have a disability.
For all of my eight years these labels had defined me. Expectations founded on my outward appearance. But more than the rest, the silence. Shrouding my personality, silence suffocated my identity – my very being sealed shut; with my loves, passions, dislikes and sharp mind deadened in the soundless void.
I couldn’t even tell you my name.
Voiceless, I had no way to communicate, relying instead on those around me to tell you, ‘His name is Jonathan.’ At home my younger sisters, Susannah and Jemima, more than made up for my quietness! Like a moon rotating the earth, they are my world and I delight in them more than anyone else. Together we danced to life’s rhythm, unfettered by the silence; instinctively knowing and being without the need for verbal communication.
At home, life is far from serene. Constantly humming in the background and hissing three litres a minute up my nostrils, my oxygen machine drones its basso continuo through my busy household. Doorbells chiming, carers coming, carers going, chatting, laughing, sisters playing. But I am silent. Due to my complex health needs, I am never alone; either Mummy, Daddy or a carer is with me all day and awake all night. Ours is the house that never sleeps.
At one end my specially adapted bedroom opens to our playroom, the focal point for us children; at the opposite end Daddy contemplates in the relative peace of his study. Working from home, Daddy is around in our lives more than most, eating meals with us, cooking supper and popping in to see us as a welcome distraction from his busy schedule. In th
e kitchen our lives are shared, and despite neither eating (I am tube fed) nor talking, sitting at the table being included and loved is one of my favourite parts of the day.
Special school was only a short drive away, but so distant from the rest of my world that it might as well have been a foreign country. It even had a foreign language. Imagine the voice used to talk to a baby: high-pitched, excitable, slightly louder than usual. Mix that with how you talk to a foreigner with little understanding of the language: slow, loud and clear with short sentences and no complicated words. You are now close to speaking ‘Special’.
In the classroom we sat, nine wheelchair islands, an unconnected archipelago isolated from each other by a sea of activity. We were arranged in a circle with just the right distance between us, so that we couldn’t touch one another (any successful attempts at this precipitated a complete readjustment to ensure it didn’t happen again. I have no idea why). The teaching assistants and teacher busied themselves around us like boats, their chat filling the air with noise.
‘Have you seen Harriet’s feed?’
‘Has Tom been changed yet?’
‘Did Lucy’s home school book come in?’
‘Can you believe what happened on Eastenders last night?’
Waiting. If academic awards were given for waiting, I would be introducing you to nine children with doctorates. Some waiting was boring, some I reserved for sleeping, but some was torturous: TV was torture. At eight years old I was the youngest in the class, which was predominantly made up of teenagers. The TV programmes we were parked in front of? Nursery rhymes with basic animation and presenters that my two-year-old sister Jemima would have been happy to watch. Presenters that my parents would rather walk out of the room than spend time watching with her. But the children in my class at special school couldn’t walk out.
One day I was positioned next to my best friend Will; as he was wheeled alongside me, he squealed in pure delight. His stiff limbs rose towards me like a swan spreading its wings preparing for flight. Looking into his piercing blue eyes we connected at a level beyond words. Together we travelled the landscapes of our imaginations; outwardly vacant, inwardly amusing ourselves, until our journey was abruptly interrupted.
‘Hello, Jonathan,’ sang a voice dripping with enthusiasm. ‘How are you today? Hello, Jonathan, are you here today?’
Indignation spilt over the land where Will and I escaped to, the music of our souls interrupted by the clanging song.
‘Jonathan! Jonathan, are you here?’ The teacher’s sing-song soft high voice, pitched at a baby’s understanding, grated on my inner eight-year-old being. Scowling with frustration, I flicked my eyes open in annoyance to be greeted by grinning smiles.
‘Oh Jonathan, you are here!’ As the teacher made her way to her next victim, Will and I exchanged a knowing glance and returned to our secret sanctum.
In the classroom our wasted school hours, days, weeks and years hung heavy, suffocating expectation with mindless activity. While I sat through ‘reading’ (which meant being subjected to Farmer Duck, the same pre-school story book we had last week), ‘art’ (having my hand painted and stamped onto a piece of paper) and ‘golden time’ (lying in a semi-darkened room watching lights on the ceiling while listening to yet more nursery rhymes), I dreamt of my invaluable education hour at home the next morning.
CHAPTER TWO
Hope in Illness
Part 1
Debilitating exhaustion overwhelms my aching limbs
Tight chest heavy, baking pressure of my skin
Waves crashing, echoing in my ears
Colour draining, rising fear
Stale smells – swirling
Dragging, drifting
Drowning
Lost
‘OPEN UP JON-JON.’ MUMMY’S VOICE FLOATED INTO MY DAYDREAM, MINGLING WITH IMAGINED REALMS OF FAR-OFF KINGDOMS WHERE I SAT SUPREME OVER ALL I SURVEYED. Today I was in a field of long grass. He was next to me. Silently we were soaking up the sun; listening to the gentle hum of insects, watching buzzards spiral over our heads and…
‘Open your eyes, Jon-Jon.’ This time it was Sarah imploring me, willing me, urging me on. Education is important; it’s also hard work. Extra hard work, especially when your body is weak. Maybe I should also not lie awake at 4:30am keeping the night carer on her toes!
Today felt different. Tiredness was overwhelming. Slipping once again into my daydream, I tried to recreate the scene. But it had changed. The pleasant warmth of the sun was replaced by a baking oppression – heat that was too hot to bear. Grass was irritating, scratching, burning. Humming became pounding; the insects biting, flying at my face. The buzzards circled closer, menacing; their plaintive mew echoing above me. His presence was still with me, though.
Once my temperature was taken, the appealing to keep my eyes open ceased. Like a blanket, apprehension dampened the jocular mood; joking, laughing voices were superseded by concerned, hushed half-whispers. The learning materials trolley squeaked back into its corner, passing on its way the medical equipment table that was taking its place. My bedroom was morphing once again – bedroom to classroom to hospital room in two hours. At least I could take the view with me.
The battle was on again! Me versus my body. My mother, in her new role as general-in-command, held the ground with the infantry ventilator, securing the mask onto my face. My vision blurred into the battleground within. With the oxygen saturation monitor in place, and effective radio links established, the general rang through to field marshal consultant Dr Dudley. Following a reconnaissance visit from the local GP, the blood test indicated powerful antibiotic artillery. With the battle lines drawn, we stood our ground and waited. Of the surprise attacks the enemy could throw, the deadliest were the seizures.
As my body lingered in the hinterland of illness, I lay in my mother’s strong, comforting arms. Sharing a serene sort of stillness, we were together; loving, holding these moments, not knowing if they were our last. Love like ours needs no language, so we sat with the prayers surrounding us and waited.
Just at the point where our tranquillity was in danger of becoming morose, Daddy arrived with my sisters, who burst into the room fresh from school.
‘Can I eat my sweets?’
‘I was on the rainbow today.’
‘Mummy, you forgot my PE kit.’
‘Is Jon-Jon ill?’
‘But Mummy, you still haven’t said if I can eat my sweets.’
Our peace shattered, the realms of reality crashed us back to normality. Tumbling over each other, their questions and bodies filled the room as I lay in the middle and let their presence fill me with love. Daddy knelt beside Mummy and placed a protective arm around us both. Jemima’s warm soul draped around me, her soft, supple cheek resting on my clammy chest, her arm stretching over my tired body so that her hand could touch my hair sticking through my ventilator cap. Scared sadness and love flowed between us, while Susannah stood over our entangled mess with concern etched on her pretty young face. Pulling Susannah’s stiff body close, Mummy wrapped us all together and uttered soothing, placating words that we all wished were true.
‘He’s OK.’ Mummy’s voice croaked as it adjusted out of a whisper, making the statement sound as lame as it was.
‘If he’s OK, why is he in BiPAP?’ Susannah needed answers to her volley of questions, but there weren’t any to reassure her.
‘What’s wrong with him?’
‘We don’t know.’
Staring at the ventilator mask strapped tight to my face, Susannah asked, ‘How long will he need to be in BiPAP?’
‘We don’t know.’
‘Will he get better?’
‘We don’t know.’
Unanswerable questions hung heavy, cut by Jemima’s prayer: ‘Please make our Jon-Jon better, Amen.’
Games of escape were calling, pirates in the garden capturing princesses from the house; my sisters ran off outside giving chase to Susannah’s imagination.
A
lone again, the contrast between their cavorting laughter from the garden and my languid sad silence was almost too much for me to bear; and like them I disappeared to my inner world. Long scratchy grass was growing over my body; hot, dry whip-thongs of wild grass creeping up my thighs and onto my torso. As I looked up, the sun split in two: one half enlarging above me to fill the sky with blinding light and heat, the other half falling beneath me, burning my back and neck. Still the grass was edging up to my hips.
Jesus’ strong, reassuring presence was in me.
Swarming, biting insects were scouring my body for exposed flesh. Finding a spot on my arm, one mosquito burrowed in, crawling under my skin, flapping and biting its way up my arm. Frenzied buzzing ensued – the way in had been found. Mosquitoes, moths and millipedes followed the trailblazer. Once past the opening they spread out, down to my fingernails, over my shoulder, up my neck and into my chest. Suddenly the grass pulled tight, terror coursing through my pulsating body. Fear gripped. Chest squeezed of breath. Body jerking. Vibrating. Fitting.
‘Mew, mew,’ the buzzards’ far-off cry called from beyond the sun.
‘Meew, meew.’ The buzzards were calling me from my nightmare.
‘Neeow, neeow.’ They were getting louder, getting clearer.
Back in the room. Looking around me, I let out a cry of anguish and relief. My sisters were here again.
‘Is he dying?’ Susannah whispered over me.
Bright jackets poured through the door, bringing with them upbeat banter and a stretcher bed. While my medical history was condensed into as few sentences as possible, orders were given about what to pack and where to find it. The stretcher was a useful luggage trolley, doing several trips before collecting me on Mummy’s lap – the rightful cargo.
As we wheeled past her, Susannah stood lost, bewildered by the last two hours, angry that once again I was taking her mummy away and scared for what might happen. Her expressionless face belied it all, as she let Daddy hug her. Sobbing, Jemima had to be prised from me like a limpet from a rock. Sounds of her distress ushered me into the ambulance, my heart filled with prayer for my sisters above all else. Medical emergencies have become part of who I am, but I will never get used to seeing my sisters suffer. As the doors slammed shut, my last view of my daddy and sisters huddled together was imprinted into my mind, like a photograph, to take away with me. The ambulance engine starting sounded more like the ripping up of a family torn apart by illness.
Eye Can Write Page 4
