My born-deaf baby became an Oxford undergraduate

Theo Jones at Oxford

Theo Jones at Oxford - Credit: Archant

Feature writer Rowan Mantell spends much of her time telling other people's stories - here she focuses on her own son.

theodore jones

theodore jones - Credit: submitted

My middle son is back from university. He returned to a strangely tidy room to catch up with old friends, share edited highlights of his student life, relax after the rigour of exams, find a holiday job. So far, so unremarkable. And yet…

He was 19 this spring and I first wrote about him in the paper just after his first birthday. A couple of months earlier we had discovered he was deaf. Suddenly our beautiful, funny, engaging baby – already up and walking and winning hearts with his big blue eyes and even bigger smile – was the first completely deaf person we had ever met. He was issued with horrible beige hearing aids which made even more horrible whistling noises, but proved to have no effect at all on his ability to hear. Amplification does not work if there is nothing to amplify.

It turned out that sorrow, panic and pity do not work either.

What did work, in those early days, was sign language. And then, two years later, a remarkable piece of technology.

theodore jones

theodore jones - Credit: submitted

Theodore spent more than three years in total silence, and his first year starved of any language. While other babies had been soaking up the sounds, words, sentence structure and grammar of their mother-tongue, ready to begin talking, Theo had presumably been wondering why everyone around him was opening and closing their mouths and looming in and out of sight without warning.

As soon as he was diagnosed I began wondering whether he would ever learn to talk. And if he didn't have any language, how would he think? And if he couldn't hear or speak English, how could he sound out words ready to read and write? And if he couldn't hear or talk or read or write, just how limited his life was going to be?

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His sister, Bethan, had just started in the reception class of our local school – would Theo be able to go to an ordinary school or live any kind of ordinary life?

Eighteen years on the answer is yes, and, right now, no.

Because after following Bethan from Norwich's Holy Trinity Playgroup to Bignold nursery, first and middle schools, and then to City of Norwich School on Eaton Road, he also followed her to Oxford University.

So his term-time life is spent in ancient quads and wood panelled studies, libraries and dining halls, being taught by some of the greatest minds in his subject. His student wardrobe includes not only the apparently compulsory fancy-dress, but also the actually compulsory gown and mortar board. And the spoken language he learned so painstakingly now includes unfamiliar words such as subfusc (formal clothes) and battels (bills).

He enjoys punting; a recent text he sent me was about the colour of carnation he had to wear on his gown for exams. It really does seem like a different world, but it is not the first time Theo has led us into different, perplexing and fascinating worlds.

When Theo was diagnosed we joined the Norfolk Deaf Children's Society and at a social evening saw older deaf youngsters communicating in sign language. We realised that maybe it would be possible for Theo to make sense of the world around him. A wonderful scheme, run by the charity, put us in touch with a deaf woman who visited weekly to teach us sign language.

Theo's first sign was 'light' and it was like a light being switched on. By the time he was 18 months old his understanding and use of language was ahead of age-appropriate, even though he did not speak a word of English.

Grandparents in Wales, aunts in London and a group of friends in Norwich to whom we are ever-indebted, signed up for sign language classes to help surround Theo with a language he could understand.

We still do not know why Theo is deaf but what seemed to be desperately unlucky also has its spectacularly lucky side. He was born just as cochlear implants were being developed. Today deaf babies are routinely given these hearing implants which convert sound to electrical impulses, bypassing the cause of their deafness and allowing them access to an approximation what everyone else hears. The internal workings of human ear includes thousands of microscopic hairs, which are replaced by around 20 electrodes inserted into the cochlea. Patients must learn to interpret the electrical impulses as sound and the result is much less nuanced than natural hearing. However, if the implant works well, and the user is in a quiet environment, they should be able to distinguish many of the sounds of human speech.

Over the past 20 years the experiences of children like Theo have proved that cochlear implants are hugely effective, but for him there was a long assessment process and a decision that we had to make on his behalf. Implants had already been proved to help adults and children who had lost hearing, but, at that time, the outcome for born-deaf people was less clear.

There is only a short period of time when the human brain is primed to interpret new sounds closely enough to assimilate a spoken language. If we waited until Theo was old enough to choose whether he wanted to rely on sign language, or try to access sound too, he would have missed that window.

It was also a complex operation, on the head, close to vital nerves, on a perfectly happy and healthy toddler.

On the other side of the debate were the statistics. One I remember particularly starkly was that the average deaf person then left school with the reading age of an eight-year-old.

Sign language is a proper language with its own, visual, grammar. It is ideal for face-to-face communication and technologies like Skype now make phone calls possible too. But it is not a written language and, despite weekly lessons and evening classes, it was not a language that we were fluent in, or one used by most of the rest of the world that Theo would encounter.

So my husband, Howard, and I decided to go ahead with the operation.

Even if it only gave Theo an awareness of sound – to hear traffic approaching, or his name, or a warning shout to keep him safe, we figured it would help him.

Just before his third birthday he went to Addenbrooke's Hospital in Cambridge to have a cochlear implant fitted.

Once the wound had healed we returned to the hospital for the switch-on.

Today, switch-on can be dramatic. There are YouTube videos of people bursting into tears of joy. Sixteen years ago the process was less dramatic. The electrodes were turned on and up almost imperceptibly over many weeks of hospital visits, and it was only gradually that Theo became aware that the world was full of sound.

Snapshot images of that time include three-year-old Theo signing the question: 'Why are the birds shouting?' He had no idea they made a noise. He soon began trying to talk, drawing himself pictures of words that looked the same through lip-reading but made different noises and meant completely different things, like rain and train.

By the time he started in the nursery class at our local school, with a sign language interpreter, it was obvious that he was academically able.

He learned sign language at the speed of that first sign, for light, made with toddler starfish fingers. As a two-year-old at playgroup, long before he had heard his own name, he wrote it on every one of his drawings and paintings. He was reading and writing when he started in the school reception class and by seven had decided on a career as an author, producing stories which were thousands of words long, complete with chapters and illustrations.

Ten years later he had moved into film-making, creating complex Bond-style movies with witty scripts and stunts, starring little brother Edmund, plus a big supporting cast of friends and family.

At school he completed Duke of Edinburgh Awards and gained the top GCSE and A level results in his year. He played football and drums, enjoyed cycling and learned to ski. The skiing was a direct result of being deaf as the Norfolk Snowsports Club, with a dry ski slope near Norwich, ran special sessions for disabled children.

It turns out that Oxford's Jesus College, where he is now studying geography, is the only one which offers its own annual ski trip. He insists this is not why he chose it.

All kinds of circumstances combined to help transform our profoundly deaf baby into an Oxford undergraduate.

He was born in the right place to learn sign language, so that he had just 11 months, instead of more than three years, with no language; and at the right time to benefit from a cochlear implant.

His sister, Bethan, four years older, proved to have a talent for language-learning and was able to keep up with his signing skills while my husband and I floundered, hands flapping ineffectually, in their wake.

He also learned to talk, alongside a baby brother, four years his junior. The boy accustomed to having things interpreted for him, was able to explain the world, and perhaps make sense of it himself, to Edmund.

Then there are his school teachers who altered teaching styles so that he could lip-read, transcribed videos so that he would have his own subtitles, and shared our own sky-high expectations of what he might achieve.

We still don't how Theo picked up enough from his lessons to excel, when he misses so many of my suggestions, requests, anecdotes and fascinating insights at home.

Our smiley, funny, engaging toddler became a little boy with impressive powers of concentration, soaking up information from friends, books, television, lessons, the internet and, for one seemingly interminable period, Pokemon cards.

Now information comes from academic tomes and tutors (and friends, television, the internet, YouTube videos and Facebook, obv.)

He is still deaf. He needs a note-taker in lectures and other aids and adaptations every day, but when I worried what the future held for my newly diagnosed disabled baby I could not have imagined quite how abnormal it would turn out.

Two years ago he took part in a national competition which involved writing and delivering a speech about personal history. He won through to the UK finals, where he talked about the history of the cochlear implant.

He didn't win, but that was not why I had to blink the tears away.

Students from non-selective state schools are under-represented at Oxford; there are vanishingly few deaf students, and even fewer, if any, born-deaf.

Everyone knows their child is one in several billion. Our family is no different.