The project almost immediately acquired a momentum of its own, as each new group member contributed drive and motivation as well as expertise. This was alarming. What exactly was I letting myself in for? Had I really considered how insanely ambitious this was? And yet, as Penny Tutt put it when I discussed it over a drink, “This one really does sound as though it’s got your number on it.”
I knew she was right, and I kept her words in mind when, in March 1998, our estate agent recommended that we view a Queen Anne manor house in Berkshire called Prior’s Court. It wasn’t what we’d been looking for: we’d wanted a modern, functional, easy-to-maintain building in the Midlands, rather than a 18th-century property in 55 acres of landscaped grounds near Newbury. But, having seen it, all the trustees agreed that it would provide the perfect environment for the school of our dreams. All sorts of work would be required to make it fit for purpose, but there was something about the place that simply felt right. We spent a few weeks talking it through and then, in April 1998, agreed to bid for the property.
The buying process was oddly complicated, involving a series of closed tenders, and it was not until September 1998 that our final bid, of £15m, was accepted. But by that stage we all knew that there was no going back. The Prior’s Court Foundation was incorporated in June 1998, and its trustee board - including Paul Cann, then chief executive of the National Autistic Society; Sir Derek Hornby, former chairman of Rank Xerox UK (who has a grandson with autism); and two trustees of the Kingwood Trust - met for the first time in August.
We also recruited a volunteer headhunter to start looking for a Principal for the school. (I had already learnt to be quite shameless in persuading people to donate their time and skills to my good causes.) And we appointed an architect to start considering - rapidly - how this Grade II* listed manor house could be turned into the kind of school we needed.
It was clear that considerable extra investment would be needed. Prior’s Court had been in recent use as a boys’ prep school (called, coincidentally, Kingswood); but that had now been relocated (to Bath), and the school we now had in mind had much more rigorous requirements in terms of the relationship between structure and purpose. Every room had to be suitable in terms of safety (e.g., no sharp-edged fireplaces or steep, rickety staircases); in terms of child-protection issues (e.g., no closed-off rooms where no one could see in through the window); and in terms of providing an environment where the pupils we had in mind would feel comfortable about learning.
Yet the basic idea seemed sound. We had a product - a teaching system that we would operate under licence from Higashi - and we knew that there would be a demand for it. We had a business plan that suggested that the school could become self-financing within five years. I had every confidence in our personnel, who by September 1998 included a Principal, Robert Hubbard, a head teacher with many years of experience teaching pupils with special needs, especially those with autism and other profound learning difficulties. It would be four months before he could join us full-time: his existing employers were reluctant to lose him. But having him signed up meant that we finally had on board someone who understood properly the educational aspects of what we were trying to do. It also felt like a huge commitment - persuading a specialist at the top of his profession to give up his job to join us - that in some ways meant more than spending £15m on Prior’s Court itself. Now we really had to make it work.
Prior’s Court was occupying most of my time by now. Not all of it: I remained a non-executive director at AEA Technology, while Giles, The Cuddy and Kingwood all required considerable attention as well. But it was Prior’s Court that felt like my main job: the one that kept me awake at night. We had set ourselves a target of opening in September 1999, and, however simple I have made it sound, that was a mountainous challenge. With less than a year to go, we still hadn’t sorted out which Higashi specialist would be helping us to implement the educational system we had seen in Boston. We still didn’t know who our pupils would be, and were nervous about doing so before a few more pieces of the jigsaw were in place. Yet we had now invested so much in the jigsaw pieces that were in place that it was impossible to entertain any possible outcome other than ultimate success.
It was a bit like my early attempts to make a go of Freelance Programmers, more than three decades earlier. Yes, it was all, in a sense, a fantasy. But it was also a reality - the focus of my waking hours as well as my dreams. And it became more real with each passing day.
The one crucial and distressing difference was that, back then, I had had Derek to support me: Derek as my sounding-board and back-stop and, above all, as the rock of certainty that gave me courage when doubts threatened to dissolve my vision. Now, apart from a few practical exchanges about Giles at weekends, the two of us barely spoke.
My dream of a Higashi school in the UK had germinated and begun to grow with barely a word of Derek’s input, although I kept him informed. Meanwhile, the situation with Kingwood had become intolerable. Derek had been bombarding the trustees and the management with complaints, and I had been forced to stand down as chairman. I had done so resentfully, but there was no alternative, and it was Derek that I blamed. He had become, in effect, an enemy of the Kingwood Trust, which seemed to me both unfair and profoundly destructive.
Looking back, I think that Derek was going through a psychological or emotional crisis that was affecting his judgement. If so, it was hardly surprising. This brave, intelligent, modest man had endured 35 years of suffering, uncomplainingly; his dreams of family happiness had turned to ashes, along with any ambitions he might once have had for his career. He had been strong for his son, fighting his corner when the whole world seemed to be against him; and he had been strong for me too, most heroically at the time of my breakdown in 1976 and 1977. If the cracks were now beginning to show in him too, who can blame him? No human being is invulnerable, no matter how determined we are to be brave.
Looking back, I can see that this was a time when, more than ever, Derek needed me to be strong for him. At the time, it didn’t seem like that. I felt betrayed by him, just as he felt betrayed by me. His hostility made me defensive. The idea that a charity I had created could in some way be conspiring against Giles was not just absurd but offensive. And now, just as a fresh dream for doing good was adding purpose to my life, Derek’s imaginings were taking all the joy out of the adventure. No doubt my judgement was less than perfect as well, and in retrospect I wish that I had been more understanding. But everyone else that I was dealing with on a regular basis seemed amazingly upbeat about the challenges we faced; Derek, by contrast, could see only the worst in things. The whole world seemed to be darkened by his suspicions.
By the summer of 1998 I had reached an appalling conclusion: we could not continue to live like this. I was spending a lot of time away from home anyway, often in London, where my fund-raising and other activities often required me to stay overnight in hotels. Now, with a heavy heart, I began to look around for a permanent home where I could live separately.
I told no one about this, apart from two or three close friends, and for many weeks we kept up the façade of things being more or less normal. I would stay in a hotel all week - something that I could now afford to do, although it seemed ridiculously extravagant - and then come back to Henley at the weekend so that we could go and visit Giles at The Cuddy. Derek was aware of my plans, but, at the same time, I don’t think he had necessarily accepted that they would come to anything. We never really discussed it; we never really discussed anything. We were, I should add, sleeping in separate bedrooms by now. Even Giles - the person who was keeping us together - was more or less a taboo subject, given our disagreements about his care and medication. But we must have talked about him a bit - in that numb, semi-automatic way that estranged parents have - because at some point we agreed that, once the purchase of Prior’s Court had finally gone through, we would take him there. It was, if nothing else, a good s
afe spot for a picnic.
That visit was fixed for the weekend of 17-18 October. By then, I had found a place - a small barn conversion halfway between Henley and Marlow - that I thought would be both affordable and practical for my new separate existence. All that remained was for me to summon the resolve to put in an offer - at which point our marital bridges would have been well and truly burnt. It would break my heart to do it; yet if I didn’t, I would go mad.
I was still agonising about this in the second week of October. It seemed such a huge step to be taking, after all that Derek and I had been through together. Had our shared life really all come to nothing? Or was there still an alternative?
I went back to Henley that Friday evening - 16 October - and lay awake for much of the night, going round in mental circles.
Then, at about 9am on Saturday, the phone rang. It was The Cuddy, telling us that Giles was dead.
22: Life After Death
THE WORLD changed instantly. It has never changed back. It was like a light going out. Nothing I can write can begin to convey the desolation. The beloved, mysterious, tormented, beautiful being who had been at the centre of my life for 35 years was suddenly and irrevocably absent; and, as WH Auden wrote, “Nothing now can ever come to any good.”
Giles was a handsome boy. The near-ethereal beauty of many children on the spectrum would merit research. Did autism inspire John Wyndham’s sci-fi The Midwich Cuckoos?
Parents who have lost a child will have some understanding of what I mean: of the inner howl of despair that reverberates through the rest of your life; of the ache that bites and gnaws and never heals. I envy the rest of you your ignorance. For 35 years, every thought I had had, waking and sleeping, had been coloured in some way by my knowledge that my son needed me and by my longing for him to be happy and safe; every thought since has been coloured by the knowledge that he is dead.
There were, in Giles’s case, all sorts of mitigating circumstances. None made his loss any easier to bear. It is not uncommon for people with autism to die young. His death, when it came, had been a merciful one: a seizure in his sleep, rather than anything long-drawn-out or agonising; he probably knew nothing about it. Derek and I had, in any case, spent most of our son’s life wondering with dread how he would fare if we died before him. Now we could set our minds at rest on that score. We could console ourselves, too, with the thought that in his final decade he had enjoyed a quality of life that would have been unimaginable in his teens and early twenties; and with the thought that, in Kingwood and Prior’s Court, he had inspired charitable projects that would continue to change many lives for the better for years to come. Such consolations were forgotten within minutes of being offered.
But one thing did change: our proposed separation came to nothing. We didn’t even need to talk about it. Splitting up was simply out of the question. The issues that had driven us apart seemed suddenly petty, compared with what we had shared in the past and the great shared burden of grief that we now had to carry into the future. We had come this far together, and we would confront whatever lay ahead together. I’m not sure if either of us was much comfort to the other at the time: bereaved parents rarely are, when both parties are so overwhelmed by their own pain. But what remained of our family instinctively pulled together, and we have remained together ever since.
The reconciliation was uneasy at first. Giles’s death propelled Derek into a pit of despair so profound that it was hard to reach him. After half-a-dozen fruitless attempts at collaboration, I made all the arrangements for the funeral myself. I am glad that I did so, and sorry for Derek that he could not. It was a humanist service, in Reading, where scores of people whose lives Giles had touched - care-workers, health professionals, a few who had lived at the various Kingwood homes, and a surprising number of family friends - turned out to celebrate his life. There was music by Mozart, Haydn and Bach. Messages from many well-wishers were read out. An address by a humanist minister emphasised the fact that Kingwood’s work would be a lasting memorial to Giles. I gave my own reading, of Max Ehrmann’s “Desiderata”, trying to focus on the fact that my troubled son was now at peace.
He had, as several people remarked, had a great gift for inspiring affection: not just from his parents but from many who came into contact with him. In his calm moments he had a delicate handsomeness - like a film star of the black and white era - that touched hearts. He went through much of his innocent, vulnerable life cut off from the world, yet he had an extraordinary and lasting impact on it. People loved him; and his parents loved him more than words can say.
Somehow we got through the funeral. At the end, a young man who had lived for some time in White Barn approached me. We had often seen one another, but he had minimal speech, and his interactions with me had hitherto been confined to spitting, kicking and hostile glares. This time, he spoke: a quiet but quite distinct “Sorry.” I don’t think I have ever felt so moved - or so strengthened - by the empathy of a fellow human being.
Afterwards, mourners were invited back for refreshments at The Cuddy. Derek did not join us. He could not bear the thought of revisiting Giles’s home. He has never been there since.
There then followed the long, bleak aftermath. The strange semi-euphoria of the funeral day evaporated, and the death-related chores that had to be dealt with (his estate; the future of The Cuddy; the disposal of his clothes and books) seemed to disappear from my “to do” list all too quickly. As each task was completed, it felt as if another link between me and my Gilesy was being severed. I was losing him, for ever, for the last time. (The very last link was broken two years later, when Daisy the cat died.)
I thought about him all the time, and dreamt about him every night. (He still appears in my dreams, a decade and a half on, but only two or three times a month now.) I was also constantly being ambushed by unexpected reminders of him: a children’s song that he liked, for example; or - with remarkable frequency - someone in the street whose looks, bearing or gait suggested his. Such surprises regularly brought me to the brink of tears. (But I don’t cry in public.) A decade and a half later, they are rarer but no less overpowering.
I will never recover from his loss. I have merely grown used to the pain, which recurs in many forms. Sometimes the thought of a tragic aspect of his life will stab me. (He never - not once - called me mother.) At others, it will be a positive memory that makes the tears well up. For example, the thought of his smile: that proper smile that he would occasionally give, oh so rarely, with his eyes. The smile would vanish as abruptly as it had appeared, but it would keep you going for months. There is, of course, joy in such memories as well. But it is a bitter joy. I will never see that smile again.
There is also one mysterious memory that still haunts and fascinates me. A few days before his death, I spoke to Giles on the telephone. I used to call him regularly at The Cuddy, just to see how he was, but the calls were not so much conversations as monologues. I would say things like “Hello, Giles. It’s Mummy. How has your day been?”, and so on; and he would either listen in silence or acknowledge me occasionally with grunts or with the noise that was his version of “all right” - a trademark response that seemed to indicate general comprehension and assent. But on this final call, for the space of less than a minute, he unleashed a long string of what sounded like sentences. It was so abrupt, and so utterly out of character, that I initially thought I had slipped into a dream - and the actual words he used never sank in. His enunciation was as blurred as ever: what was unusual was that he was stringing whole sequences of words together, rather than limiting himself to one-word utterances as he usually did. Afterwards, I asked the carer who had been supervising the call at Giles’s end if my ears had been deceiving me, but she agreed that he had indeed been talking in an almost normal way. Yet neither of us could pin down what he had said. The words were too indistinct, and had taken us too much by surprise - and before we knew it
the memory of them had melted away.
Years later, I am still tantalised by this incident. Was something happening in his brain, perhaps related to the seizure that would kill him? Was he saying goodbye? Was he trying to communicate something important to me? It is profitless to speculate; but, equally, it is almost impossible not to.
For a long time, Derek and I barely spoke about Giles. Each knew that the other was thinking about him, but for the first year or two it was simply too painful to discuss the subject. The best we could offer one another was simply to be there, slowly rebuilding the trust that had broken down between us. They say that the death of a child kills most marriages; I think ours survived precisely because, at the moment of bereavement, it was in trouble. Neither of us had any expectations of the other, and what half-comforts we were ultimately able derive from one another thus came as a welcome surprise rather than a disappointment.
But it was a painfully slow rebuilding process, putting back together not just our relationship but our two broken lives. Each of us adopted a quite different approach. Derek resolved that, having had his life poisoned by autism for 35 years, he was never again going to give the subject a moment’s thought. Disillusioned by what had happened to Giles, he had long abandoned the Church of England Christianity that had sustained him through our early married life, and he now proceeded to spend several years in a state of existential despair from which he has only recently and partially emerged. I, by contrast, felt a new urge to explore life’s spiritual dimensions, in the hope of giving meaning to what Giles had been through. Derek had lost faith in his religion; I lost faith in my atheism. I doubt, however, if either of us has finished our spiritual journey. We are still exploring, and may yet end up in the same place.
Let IT Go_The Memoirs of Dame Stephanie Shirley Page 26
