Sophie can't walk or talk ... but she can write

Many children learn their first words at their father's knee, but few overcome odds as great as Sophie's. Mark Stewart-Jones tells his daughter's story
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Indy Lifestyle Online
MY DAUGHTER recently wrote that she wanted us to move to Paris. Sooner rather than later, she added. There may seem nothing particularly unusual about this, until you know that Sophie is only seven and is unable to walk or talk or stand or even sit. Sophie has cerebral palsy resulting in asymmetrical spastic quadriplegia. She is dependent on others for all her personal needs and there is little reason to suspect this will change in the future. She is also beautiful, enigmatic and brilliant.

It was always planned that my wife would return to work and I would remain at home after our baby was born. Sophie arrived in the spring of 1990. There were serious problems during the delivery and Sophie was asphyxiated and suffered brain damage as a result. In simple terms cerebral palsy is a condition which jumbles messages between the brain and muscles causing stiffness (spasticity) and problems with movement and co-ordination. The child may also experience problems with eyesight, hearing, speech and learning. So we were warned that there would be long-term effects caused by the injury to the brain - the only question remaining was to what extent. Apparently this was something we would only learn in "the fullness of time".

My wife returned to work a month or so later than planned and in August Sophie and I began our adventure. She needed constant, undivided attention and I thought (for both our sakes) we should try and turn this into a virtue. We would become a team, a working self-contained unit. So I set about involving her in everything I did. I tried to stimulate her in as many ways as I could. I wouldn't claim that I had any method or that I even knew what I was hoping to achieve, but this approach seemed to make some sort of sense. Even with all her problems I could see that she was a bright, alert little girl and I sought comfort in Pascal's Pensees, where he writes, "It is not possible to have reasonable grounds for not believing in miracles."

The first casualty of the new life was my old job: freelance journalism. With Sophie's talent for not sleeping for more than an hour or two every night, my ability to keep ahead of deadlines became a thing of the past. This, I thought, was a good time to start The Novel. There were no deadlines and Sophie and I could usually manage a minimum of few hundred words every day. Over a year, even this less than prolific total mounts up. She could perch on my lap quite easily as I sat at the word processor and feel that it was something else we were sharing. She was about eighteen months old when I started and alongside the time spent on exercise and feeding and bathing and shopping and going out for our daily walk in Greenwich Park, it became a regular part of our daily routine.

She was fascinated by the keyboard and the monitor and would watch intently as the words appeared on the screen. When appropriate I would read out what I'd written. Not simply for its possible therapeutic advantage, but also because I used to enjoy the company, writing being usually a fairly solitary occupation. At the time I didn't regard this as a particularly important activity for her. Its possible and lasting significance would not become apparent for a number of years, and in a manner I would have scarcely allowed myself to dream of at the time (although I do recall myself turning her face away from the screen whenever I wrote something too adult for her eyes). I completed my book not long after her third birthday and I was half way through my second when Sophie started attending school full-time. I still feel very strongly that these novels were books we wrote together.

Sophie, meanwhile, was progressing through the pre-school assessment process prior to the writing of her statement of special educational needs. While I remained confident of her intelligence I was becoming aware that I needed to find a means of proving this. There had always been something, an awareness, I glimpsed in her eyes, but it was too abstract to construct a particularly persuasive report around. Next time you find yourself bored in a traffic jam, see how long it takes you to imagine yourself out of the situation into last weekend, next weekend, your holiday plans - anything as long as you escape from the jam. Then try and imagine a child with severe cerebral palsy and very limited movement using the brain in much the same way. If Sophie is self-taught, I don't blame her.

In the end the proof required was provided by Sophie and not by me. Shortly before her fifth birthday, after her first day at school, a pen was placed in her hand and she was asked what she had been taught that day. She wrote, after several faltering attempts, a clear and precise letter "a". On her fifth birthday, a couple of weeks later, she wrote her first word, "big". Since then there has been no stopping her. She is able to move her hand from the wrist, which means that she can form letters but needs the paper moved beneath her hand (a bit like a carriage return). At first she also needed the help of an adult to place a pen in her hand and support her arm. We are now encouraging her to write without support. While she has enough movement in her hands to write in the traditional manner, she lacks the fine motor control to operate a computer at present. We hope that this is a skill she will be able to develop in the future.

The people who have terms for this sort of thing call it "facilitated communication" but it was not something I had ever witnessed before. (Although it made some pleasing, vague sense to me; that the desire to communicate in a child without speech might manifest itself in other ways - in, for example, writing.) At first I viewed it only as a method by which she could indicate her wants and needs, but it quickly developed into a means by which she could fully express herself. She showed herself to be generous, vain, funny, sarcastic, loving and perceptive. Last year she started writing poetry, which is a perfect means for her to express herself.

I do not claim that her sitting on my lap while I wrote those two novels is solely responsible for all this, but I think it might have had a small part to play in igniting her interest or nurturing her talents. I do not doubt that it was the point in her development where she first became aware of the mechanics and the possibilities of written communication. I mistrust a happy ending: it can often blind us to the unconditional nature of love. But I didn't spend those five years stimulating her because I refused to accept her condition. On the contrary, I did it precisely because my acceptance was so complete.

'An Ecstasy Of Fumbling' by Mark Stewart-Jones is published by the Book Guild on 29 January at pounds 6.95. To order direct, call 01273 472 534