The Schafer Autism Report

Farewell, My Beautiful Boy

       By Stephen Venables (No link available). This is the lead article in Mail on Sunday - Review, UK and covers 4 pages with more promised for next week.

       As soon as 15-month-old Oliver was given an MMR jab, he was stricken by illness.  Here mountaineer Stephen Venables describes his desperate fight to save the life of his son.

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      We buried him on the last day of October, a day of low clouds scudding through a sodden sky. The mat­ting draped over the mound of excavated earth was a luminous green and the grass underfoot was cold and dank where Edmond, Rosie and I - brother, mother and father - stood beside the grave, flinching at the finality of those ancient words: ‘Earth to earth, ashes to ashes, dust to dust.’ Echoing their elemental truth, the coffin settled in its bed, oak reverberating on rock.
      Like the swallows, Ollie arrived in the spring and left in the autumn. In between, we joined him on a journey which lasted 12 years and four months.
      At first we called him by his full name, Oliver. I liked the unhurried resonance of those three soft syllables and it was only after some­thing happened in his brain, upsetting the subtle balance of sensory perceptions to the point where language became almost impossible for him to process, that we changed to the simpler ‘Ollie’, so much easier to hear and to say.
      Now that perky, staccato name seems inseparable from the boy we loved, synonymous with the laughter he brought to our lives. Inseparable, too, from a kind of radiance; an innate joyfulness which was never quashed despite the huge challenges he had to face. So, as I try to tell the story of how he grappled with those challenges, I shall call him Ollie.
      He was born at the Royal United Hos­pital, Bath, on June 6, 1991. He weighed 61b 5oz; a touch thin, but nothing to be alarmed about. After nine months’ wait­ing, Rosie and I had imagined that we knew him already, but this person was a complete stranger. He peered uncompre­hendingly at us and we stared back at his crumpled brow and unsmiling eyes. It had been a difficult delivery, but after three days the doctors announced he was healthy and we could all go home to our house in Larkhall, just outside Bath.

      Our love for him, hesitant at first, burst into flower. We watched his eyes brighten and focus, while his smile seemed to have a special intensity, engaging robustly with the world. Soon that smile became a laugh. For him the world was a funny place, full of delight. And the more he delighted in the world, the more we delighted in him.
      The first signs of the catastrophe that would envelop our lives came a few days before Ollie was christened. He was 15 months old when Rosie took him to the local clinic for his vaccination against measles, mumps and rubella.
      While I would learn much more about MMR, at the time I was hardly aware of its existence.
      It had never occurred to me that anyone would want to vaccinate children against the common childhood illnesses I and my brothers and sisters had experienced without problems.
      Rosie was unsure whether Ollie should have the MMR, but our health visitor said measles was extremely dan­gerous: how would Rosie feel if he became blind or suffered brain dam­age? And what about her responsibil­ity to the community: her son’s part in the ‘herd immunity’ which was designed to ensure against out­breaks?
      The health visitor was just doing her job, relaying Department of Health policy. However, looking later at official pronouncements on child­hood diseases, I felt the whole per­ception of risk had been changed, as if to justify the blanket MMR coverage introduced in 1988.
      For an intelligent, responsible mother like Rosie, the assumption that she should bow to a uniform policy and inject three live viruses simultane­ously into her precious 15-month-old child was hard to stomach. But the scare tactics wore her down and she took Ollie to the clinic.
      The first night after the jab, Ollie ran a temperature and had nightmares.
      For a fortnight he remained intermittently ill and the night terrors continued. He also began to develop a slight tremor in his right hand. Over the next few months his medical notes recorded a worrying ‘malaise’ and he suffered from a succession of viral infections.
      We still cannot be sure whether the MMR vaccine did lasting damage. But, at the time, all Rosie knew was that Ollie was not the same healthy child he had been before. At first, he was fine most of the time. He was a bright, alert, laughing personality who filled our lives with pleasure. He was learn­ing to talk and count and was full of curiosity. But in the summer of 1993, when he was two, his intellectual development began to regress.
      When we holidayed with friends he appeared disconnected, either not comprehending what we were all up to, or wilfully going his own way. Rosie became alarmed by his increasing bouts of trembling and thirst. She noticed that his speech diminished during these episodes and wondered whether he was diabetic, but a urine test proved negative.
      By New Year, 1994, Ollie’s bubbling eagerness was being stifled by an unsettling rigidity. He arranged his toy cars meticulously on the arm of the sofa, head sideways, sighting out of the corner of his eye. His pronunciation became distorted - ‘duck’ became ‘dawk’, ‘darling’ became ‘dorning’ -and his vocabulary dwindled. We watched helplessly as learning and language evaporated, like files vanishing from the screen of a corrupted computer.
      He was enslaved by distressing phobias, the vacuum cleaner reducing him to screaming terror. While his younger brother Edmond flourished, Ollie was drifting away into a parallel, inaccessible world.
      In April, Rosie took Ollie to see a paediatrician. He came swiftly to the point: as far as he could tell, Ollie was autistic. We walked out into the bright blossom-scented afternoon, strapped our unique, precious, clever, beautiful son into his child seat and drove slowly home to start our new life in a foreign country called Autism.
      As we did our best to navigate through this country, we learned that autism covers a vast spectrum. Nevertheless all autistic people have a fundamental difficulty with communication. They may retreat into repetitive behaviour and are prone to overwhelming fears and phobias.
      No one knows what mechanisms alter the minds of autistic children, but something appears to go wrong with the brain circuitry, possibly caused by toxins. The result, in Ollie’s case, was that his whole sensory and intellectual perception were skewed, so that the people and the world around him became frighteningly powers of speech. As we struggled to come to terms with all of this, we had to adopt split personalities. However much we wanted to fight Ollie’s con­dition, we had to learn to live with it.
      We had to learn to love the new Ollie and his bizarre ways, while cherish­ing the affectionate, funny, sensitive, mischievous soul of the old Ollie which continued to shine through the distorting fog of autism.
      When we went on holiday to France he screamed fran­tically in our cabin on the ferry, apparently fright­ened by the dark confinement. When I took him on to the upper deck, he laughed and shouted, enthralled by the wind and the sky, and tried to climb out of my arms and hurl him­self into the sea.
      Of course we did all we could to see if there was any way to reverse the damage that Ollie had suffered. We tried so many things, from vitamin supplements and enzymes to a gluten­free diet. Most rewarding was the educational therapy technique devel­oped by a Norwegian psychologist named Ivar Lovaas, aimed at helping children to relearn the language that had become so alien to them.
      The search for funds immersed us in a world of bureaucracy and regulations as we lobbied and pestered our local authorities to help pay for Ollie’s treat­ment. Much of the burden fell on Rosie, as my work as a mountaineer took me abroad for weeks at a time, writing, making television films, promoting books, doing corporate lectures, even climbing the occasional mountain; I was one of the very few to have con­quered Everest without oxygen.
      The Lovaas technique seemed effec­tive and Ollie’s comprehension and matching skills appeared to blossom, and with them his confidence and hap­piness. Life was hopeful again, and as Ollie took the first tentative steps back to speech, he was clearly enjoy­ing his own success.
      At times he drew in on himself to escape all that was noisy, threaten­ing or bewildering. But when he responded to our efforts and smiled delightedly at his achievements, it all seemed worthwhile. He went swim­ming once a week and rode Shetland ponies with Edmond and my mother. Ollie rode with natural ease, but he frequently jumped off without warn­ing, as if he were riding a tricycle.
      Then, at Christmas 1995, everything changed again. Ollie had fallen down some steps, hurting his leg. He had an X-ray which suggested he was OK, but both his legs began to ache. Rosie tried to take him for a walk, hoping that air and exercise might cheer him up. He kept stopping, and years later Rosie reproached herself for making him continue: ‘He kept wanting, me to carry him. Then he burst into tears, crying and crying, and I realised he must be in terrible pain.’
      Back at home he collapsed into bed, refusing food. When the doctor came, Ollie was unable to tell him what was wrong, but his eyes seemed infinitely sad, his face was pale and his legs piti­fully thin and bruised. He was taken into hospital, while I went to Scotland for work. I was still away when I had a call from Rosie who broke it to me very calmly, very gently: ‘Hello dar­ling. I’m afraid Ollie has leukaemia.’
      My first response was disbelief that this could be happening to our son, on top of all he already had to endure. I hurried to the children’s hospital in Bristol to meet Rosie. Ollie lay sleeping in a darkened room, attached to drips. I stroked his frail, vulnerable body and then we left him in peace.
      The consul­tant told us Ollie had acute lympho­blastic leukaemia, the most common childhood form of the disease, for which the prognosis was good: about 70 per cent of children pulled through.
      On his first night in the oncology unit, I stayed with Ollie to watch over him while Rosie returned to look after our neglected second son. I was desper­ately tired but he remained resolutely awake, lying in the semi-darkness, plugged into his transfusion line. He was terribly weak and I longed to fold his frail body protectively in my arms, but knew he would hate that as he did not like to be picked up.
      Then came the ordeal of the treat­ment. As with most cancers, the main­stay was a cocktail of cytotoxic drugs targeted at the rogue blood cells - chemotherapy - coupled with blood transfusions. Ollie had to face the repeated trauma of needles piercing hands and arms, together with a baf­fling new world of strange faces, bright lights, noisy machinery, crying children and chemical smells.
      His treatment was easier when he was fitted with a portacath, a device to facilitate injections. But his progress had to be monitored with lumbar punctures, which meant he had to lie perfectly still while the needle was inserted into the small of his back. At first he was sedated, but on the third occasion it induced a fit and from then on he had to have a full anaesthetic.
      So once a month he had to be deprived of food and drink, sedated and wheeled into theatre, where I would play one of his soothing music tapes, stroke his head and cradle its sudden weight as the anaesthetic took effect. I left him to the experts, return­ing as he regained consciousness in the recovery room All this Ollie had to endure without, as far as we could tell, any understanding of why it was being done to him - and unable to tell us how he was feeling.
      Photos from those days show Ollie with a bald head - a side effect of chemotherapy - and sitting in the unit’s family room, his huge dark eyes staring sadly from deep sockets. Sometimes we would eat together and Rosie would settle him into his hospi­tal bed, say his prayers, kiss him goodnight and take Edmond home. I would sit for ages beside him and on one occasion I tried surreptitiously reading but when I moved my hand to turn the page Ollie held out his thin weak arm as if to say: ‘Don’t move - stay exactly as you are.’
      After a while Ollie came home, returning to the hospital at regular intervals for his treatment. Eventually all this paid off. The chemotherapy appeared to be working and the con­sultants told us the cancer was in remission.
      As for his autism, Ollie seemed to be making progress. He could emulate some sounds when we coaxed him - ‘bheez’ for ‘please’ - and he would daub additions to his brother’s paint­ings. When we all sang Happy Birth­day on his fifth birthday he laughed joyfully and ran out into the garden.
      In September 1996 it was time for school. A local primary school had a unit for autistic children and we took Ollie for an introductory visit. A new layer of soft, velvet hair now covered his head, but he still looked very fragile, riding a tricycle round the playground.
      For Rosie it was another terrible wrench, handing this vulnerable child over to strangers. But he alternated between school and home, where we had a series of helpers who shared his care. He loved physical activities, boisterously playing with his helpers, climbing the trees in our garden, even though I had had to surround it with a seven-foot fence as he would run away at any opportunity.
      As summer 1997 approached we felt cautiously optimistic. Ollie was faring as well as could be expected at school, and his leukaemia had been in remis­sion for a year.  But then came news of Ollie’s latest tests. It was as bad as it could be: leukaemia cells had been found in his spinal fluid.
      We faced a terrible deci­sion. He could start a new two-year course of radical and aggressive treat­ment, including repeated chemother­apy injections and high doses of radiation to his spine and brain. The prospects of success, the consultant told us, were around one in five. The alternative was to let him die.
      It seemed impossible that a death sentence hung over this ebullient child.
      During the weekend Rosie and I grappled with our predicament. I felt we had to respect Ollie’s joyfulness. He had an extraordinary ability to bounce back from pain and suffering, to seize enjoyment, to grasp life. I argued that we had to take the chance of success. Rosie was reluctant, des­perate to spare Ollie more pain, but in the end that is what we decided: we would go ahead with the treatment.
      That summer was dominated by Ollie’s oscillating health. When the chemotherapy regime allowed it, Ollie went to school, but he was now struggling to cope with its demands. Some of his fellow pupils had exten­sive speech and were beginning to spend time in the mainstream school.
      But even tasks such as simple jigsaws seemed to defeat him, and the frus­tration made him tearful. Nausea, itching and stabbing pains, induced by cytotoxic drugs, intensified the frustration.
      At home, banging his fists against the side of his head, he would advance on Edmond, grinding his teeth, pressing his face angrily against his brother’s.
      Several times, thwarted over forbidden food or a locked cupboard, he tried to bite us. The best response was calm avoid­ance, holding his arms firmly, and manoeuvring him to a quiet place where he could sit and recover. Rosie would gently stroke his head and Edmond would often sit with him too, comforting his elder brother.
      As 1997 came to a close, there was a pervasive sense of struggle; of Ollie finding everything too difficult. He seemed increasingly distressed by attempts to make him conform to ‘normal’ life. For all his efforts at school it was too much for him. His illness hadn’t just destroyed skills. Its relentless assault on mind and body seemed to have beaten down even Ollie’s boisterous confidence.
      Most distressing of all was his soured relationship with Rosie. At times he could hardly bear to look at her, perhaps blaming her for all the frightening treatments inflicted on him over the past two years. It was hard not to feel bitter when we learned about other autistic chil­dren progressing. With Ollie we were simply surviving from day to day, just trying to make life bear­able for him, not knowing how long that life was likely to continue.
      But Rosie was not to be defeated. Ever determined and resourceful, she found a new education pro­gramme based on trying to enter the autistic child’s world and rein­force his every positive move. We decided to withdraw Ollie from school and care for him at home. We designed a special Ollie-proof room that was his private haven and enlisted a new roster of helpers, paid for by a mix of local-authority funds and donations from charity.
      We played with him, doing our best to encourage and reassure him. He might romp with me or one of the team, or spend two hours sitting on a shelf staring down at one of our helpers. We rejoiced at his increasing ability to accept strangers into his life, his faith in fellow human beings restored.
      He became more confident and more playful. During his now rare visits to hospital, as the leukaemia treatment approached its end, doctors and nurses commented on his increas­ing eye contact.
      In March 1999 came more reason to hope. His cancer consultant told us it was time to stop treatment. The course was complete, although he would continue to have occasional blood checks. We all knew the odds on another relapse were high. But for the moment Ollie was free from the relent­less cycle of oncology. He looked fit and strong and we had to base our life on the assumption he would stay that way.
      Throughout this time I had been making videos of him, recording what are now treasured moments in his life; the setbacks and the progress. One sequence captures his delight at birdsong and light shining through an empty bottle.
      In another, Rosie takes his feet in her hands and jiggles them. Then Ollie flings himself into the foetal position. Rosie lies behind him, snuggled into the same position. Then suddenly Ollie leaps to his feet and a new activity begins.
      This was a child who six years ear­lier, before neural unravelling set in, had been talking in sentences and starting to read. On the face of it we had little progress to report. There had been no sudden, Biblical bursting back into speech - barely even a repeat of the incremental learning achieved during the behavioural Lovaas exper­iment. But we had to avoid such com­parisons - forget about who Ollie wasn’t and celebrate who he was.
      We had to admire his serenity and emulate his delight in tiny, apparently inconsequential details. We had to cherish his laughter, thank him for every smile. And applaud his gigantic efforts to articulate words as he tried so hard to make the connections between brain and facial muscles.
      Above all we had to be thankful that, after the trials of the past three years, he seemed happy.
       Adapted from Ollie, by Stephen Venables, published by Hutchinson on March 16 at £14.99. To order your copy for £11.99 plus £1.95 p&p, call the Review Bookstore on 0870 165 0870
      NEXT WEEK: ‘No more needles.  I don’t want him to suffer any more.’