For the first seven years of his life Jonathan Bryan was trapped. Unable to speak or move, the only way he could communicate with the outside world was by the flicker of his eyes, the odd smile and occasional jerky arm gesture.

After being starved of oxygen in the womb when his mother was in a horrific car crash, the little boy was ‘locked-in’ to his body.

Diagnosed with cerebral palsy, one doctor even urged his parents Chantal and Christopher to end his treatment – and therefore his life – warning them that Jonathan may never run, walk or even recognise them.

Later, teachers at his special school dismissed him as a lost cause, preferring to focus on sensory play rather than spending time trying to communicate with him on an intellectual level. But his parents felt differently. They refused to believe that there wasn’t a keen intelligence lying behind the bright eyes of their beautiful son.

Now, after years of dogged persistence, Chantal has developed a way of communicating with Jonathan finally releasing him from a life of silence. It was an astonishing breakthrough that led former social worker Chantal to realise what she had suspected all along: that Jonathan, who is permanently confined to a wheelchair, has a fully functioning mind capable of complex thought.

Chantal had started to teach Jonathan letters, phonics and numeracy for an hour every morning from the age of seven. Then, aged nine, his mother taught him how to spell using a Perspex spelling board featuring colour-coded letters of the alphabet.1

Jonathan’s first board was simple. He would move his eyes to look at a particular part of the board – indicating whether he wanted a noun, adjective or verb and would then laboriously choose from more than 100 words Chantal had painstakingly printed out and colour coded. At first, progress was slow, with Jonathan having to learn how to read, write and spell. Two weeks in, Chantal began to wonder if he fully grasped the task.

But rather than abandoning the project, she took advice from a specialist who suspected Jonathan was simply bored and encouraged her to make the process harder for him. On the spelling board he uses today, Jonathan can slowly spell out any word he wants. It worked. Within weeks he was spelling out full words. The real breakthrough came, however, when Jonathan and his mother had been arduously writing a story about pirates.

‘About half way through he spelled out the word “myriad”,’ Chantal recalls in wonderment. ‘It was certainly not one of my pre-printed words or a word I thought he knew,’ she says. ‘It was a beautiful moment. That was the point he found his own voice. I realised I could ask him anything. My husband Christopher and I had tons of questions but we had to be careful. I asked what he didn’t like. He said having his face washed. You can’t underestimate how wonderful it is to be able to have a conversation with someone you love so much and in some ways know so well.’

Today, Jonathan is now able to say whatever he wants. He has three boards with spelling, punctuation and numeracy – there’s even a hashtag for his social media posts. He has started a blog called ‘eyecantalk’; entered a short story to a BBC competition; writes poems; and has even produced an autobiography.

He attends mainstream school every afternoon where he is one of the top pupils in his class for maths and is determined to help other children like him – there are 30,000 in the UK with cerebral palsy – to learn how to communicate.

Not bad for a boy who has, for much of his life, been living with the label ‘profound and multiple learning difficulties (PMLD)’ and was essentially written off.

Chantal explains that Jonathan has had several life-threatening episodes. After being ‘unlocked’ and able to communicate, he described to her a near-death experience in which he’d ‘visited Jesus’s garden’.

‘He could run fast, talk and climb trees,’ Chantal says. ‘His little sister, Susannah, asked whether there was a loo. Jonathan said he didn’t know, he didn’t need to go. He said he didn’t meet Jesus but is very much looking forward to doing that when he goes back.’

It was January 2006 when the family’s lives were changed for ever. Chantal had been 36 weeks pregnant when another car crashed into theirs while they were en route to a pub lunch in Oxfordshire. Remarkably, bar some severe bruising, they were unharmed, but the impact caused a placental abruption. Chantal started bleeding and Jonathan was slowly robbed of oxygen.

In hospital his heartbeat suddenly dropped and he was delivered via emergency caesarean section. Later, at Bristol Children’s Hospital, a technician said Jonathan’s MRI brain scan was one of the worst he had seen.

‘It was pretty catastrophic,’ Christopher, 40, says. ‘They said he would have mild to severe cerebral palsy. That he may not run, walk, sleep, laugh, see, hear or recognise us.’

Chantal and Christopher, who is a vicar, faced a decision about whether to carry on with treatment, but after seeing Jonathan lying helpless in his cot they decided to give him a chance. ‘There is a photo of him in an incubator before he goes into the MRI scan,’ Chantal recalls. ‘There was something in his eyes imploring me.’

He was diagnosed with severe cerebral palsy, and, before a kidney transplant when he was three, was having regular dialysis. A post-transplant infection caused severe lung damage. He will need to wear an oxygen tube to breathe for the rest of his life.

‘There were moments in the first year when we wondered if we’d done the right thing,’ Christopher says. ‘But then you start to see a personality emerging.’

Jonathan’s life expectancy is difficult to gauge. ‘He could get an infection and go within the next six hours,’ Christopher says. ‘We’ve been living on a knife-edge for ten years.’

This becomes clear today when Chantal starts the process of packing Jonathan back into the family’s specially adapted van after he’s cheered on Jemima at her pre-school sports day.

Chantal notices Jonathan looks blue and that the oxygen in his tank has run out. She springs into action. He can go only a few minutes without. The carer struggles to free a second tank from its holder. Chantal calmly assists, returns and plugs Jonathan back in. Crisis averted.

Back at the family’s four-bedroom rectory, Jonathan is given a milk formula through a feeding tube in his stomach.

After a quick session on his bipap ventilator – a full face breathing machine rather than a tube in his nose – his next stop is his village school, five minutes up the road. Next September he will go to his local secondary school. He recently went to an open day and answered some maths questions quicker than those aged 14 in Year 10.

It is quite a remarkable difference from even a year ago when he was still attending special school. It had worked well at first. ‘There were lots of lovely sensory activities, which were great,’ Chantal says. But it soon became clear Jonathan would not be taught how to read or write. Marion Stanton, an expert in children’s complex communication issues who had been seeing Jonathan, then suggested Chantal try to teach him letters, phonics and numeracy at home.

Jonathan started attending Stanton St Quintin Primary School every day from last September and his parents were delighted to discover that the other children treated him just like any other pupil.

Back at the family home, I ask his mother about the future. ‘The future is one day at a time and no more,’ Chantal says. ‘Last week Jonathan had a very high temperature and was on his ventilator. This week it is lower. But you can’t spend your time worrying. Every day is a gift. Jonathan is a gift.’

 

Adapted and edited from an article in The Mail on Sunday, 3 July 2016
1 These boards, which cost up to €150, are commonly used by speech and language therapists.

This article can be found in Mirror 0616.