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#25stories – one brother’s account

Simon: A history of his life by his brother, Andrew

These notes are probably not entirely accurate in terms of dates etc. They are an outline of my impressions and memories, but it may help in piecing together part of how Simon is today.

Simon was born into a very loving family. Our father was a hard working parish priest, and despite clergy incomes being quite low, our mother has never worked for an income, but always saw her role as full-time mother. We were both cared for so well, and our parents could not have done more to give us both as good a childhood as you could wish for.

Simon’s early life and development were completely normal. He was a ‘bonny’ child, and I remember as a baby he looked us in the eye and communicated as normal babies do. There was nothing wrong with my beautiful brother.

As he approached his third birthday (1956), we began to be aware that his speech was not developing as well as it might be, not progressing much beyond single words. That’s all I was aware of – our parents may have noticed other things. Eventually, they decided to have him assessed by a professional. I remember the labels that he came back with: predominantly ‘autistic’, but also with elements of ‘schizophrenia’ and ’psychosis’. I was 10 at the time and it had quite an impact on me – the effect on our parents must have been devastating.

‘A physical confidence and fearlessness that were amazing’

His condition manifested itself in his early years as an inability to communicate verbally, to look you in the eye, and by constant hyperactivity. This was combined with a physical confidence and fearlessness that were amazing. In 1958 (Simon's fifth year), my father moved to a new parish and another lovely vicarage in half an acre of garden – mostly an orchard surrounded by an 8ft high wall. Simon could climb every tree to the top (even the large ones which were over 20ft high), and he could climb up the garden wall and run along the top of it. On one occasion he decided to inspect one of the chimneys (aged I think, around seven), by climbing out of a bedroom window, around a very deep stone gutter, up the roof to look down the chimney, down the other side and back round another large gutter into another widow. We’d been alerted by someone who came to the door, having seen Simon on the roof, and Mum was able to help him back in.

Simon’s obsessions were becoming apparent as he learnt to read, write, and draw. Despite his difficulty with communication, he was obviously very bright. Everything he wrote was correctly spelled, and he constantly drew very accurate pictures of objects like the kettle (with cable, plug, and electric socket), the television, and clocks. He would draw the kettle over and over. His speech pattern as a child was generally without expression and very repetitive.

Troubles at school

My parents tried their best to give him as ‘normal’ a home life as they could and sent him to the local infant and then junior school. Teachers were also very challenged by this unusual child, but they were also magnificent in their ability to cope with him and educate him as well as they could. He was of course often very disruptive in the classroom, and there came a point where our parents had to decide how best to continue his education in the light of more and more problems at school.

My father found out about Rudolf Steiner schools, and particularly a school just outside Aberdeen, 500 miles away. They had a good reputation for the education of children who were known in those days as ‘mentally handicapped’. After some time, meetings with the principal etc. our parents decided that it was the best place to give Simon some chance of a fulfilled and successful life. I remember it was recognised that some autistic children could revert to ‘normality’ (or near normality) in puberty, and this was also our hope for Simon.
It must have been with a very heavy heart that my father took Simon on the train (aged I think, seven), to Aberdeen and there said goodbye and came home. I can’t imagine how that affected him or Simon in their different ways. But, I believe his time there was the best that it could have been for him, and he still remembers his housemothers and teachers there with great affection.

I am seven years older than Simon, so it was after I went away to college that Simon came to live with Mum and Dad again (aged 12 or 13). His education continued more locally, and I knew little of what went on in those years, but I know it was not all good. He suffered at the hands of a man, and the shouted threats of various punishments still come from Simon now, which echo that time in his life.

The quest for a fulfilled life

Revelations of abuse at his local school came later, and I know at this time our father was working hard to find a place for Simon to live as fulfilled a life as possible as an adult, realising that he and Mum would not be able to cope with him full-time at home. In 1972 (Simon was 19), our father moved parish again and the vicarage was a smaller one. By then, I had become more independent. I had started work for the BBC in London (1970-72), then in Bristol (1972-75) when I lived in a flat in Clifton. After that, my work took me to Birmingham for 25 years. I married Decia in 1977 and we have two children. I was of course, very much in touch with the family, but our parents made sure that I was not over-involved with Simon’s life and problems.

With the help of the Rotary organisation, Dad managed to raise money to convert a former home for the blind, to a home for people like Simon, and he moved in there. But the success of this scheme was short-lived as far as Simon was concerned. Only a few months later, when my parents were away on holiday, the staff felt unable to cope with Simon’s behaviour and he was sent to live at an institution that no longer exists. My parents were powerless to intervene, and this must have been a very sad time for them and Simon.

On his retirement from work as a parish priest in 1983 (Simon was 30), Dad became chaplain for a NHS Trust and worked at the hospital with Simon and many others. He came to learn a great deal about the work there. Many of the ‘patients’ became great friends with him. He found this work even more fulfilling than his parish work – it had a great impact on him for the rest of his life.

As often as possible, my parents tried as much as they could to enhance Simon’s life. They took him on holiday several times to the Lake District. Dad went on a trip to Paris with Simon – a very well-remembered time – and took him in a balloon ride which included flying over the Clifton Suspension Bridge. These are just highlights which I was told about – there must have been many more.

‘A great family love’

During the 1980s, Simon used to come for short holidays in the summer to our house in Birmingham. Around this time Simon was moved to a house. I think he had his own room there for the first time and his situation was much-improved. Throughout the 1980s and 90s, Simon had good care and visited home regularly, staying overnight, I think, at least once a week. Apart from his occasional visits to Birmingham, I was still ‘out of the loop’ for Simon – my career with the BBC and my family kept me busy and I was not involved with his life. In 1998 on a visit to us, my father had a heart failure and went into hospital. We were warned then his life might not last very much longer – though in the event he had another six years.

For many reasons (including the health of our respective parents), my wife Decia and I decided to move closer to them in 1999, in the same year that Simon moved to a Brandon care home. From then on, I began to help more and more with Simon’s home visits, and came with Dad to get to know the staff there. As his day care began to have an impact on his welfare and he began to blossom. In particular, I must mention Brenda White, who did a great deal for Simon, encouraging him to talk about his life to a public audience, taking him on visits to London and elsewhere, and even helping him achieve his ambition to drive a car (albeit with an instructor in a private car park!). We realised that we may, perhaps, have found the long-term solution for Simon.

Dad’s impact on Simon’s life is inestimable. There was of course, great family love between all of us, but the practical aspects of Simon’s life were very much in Dad’s hands even after Simon came to his care home. We were all so pleased that he seemed to be flourishing there. Of course, there were problems still. Simon could still have tantrums and other behaviour problems, but overall the staff and day-carers were able to handle these times, and Simon made good friends with many of them.

The sad effects of grief

Dad died in January 2004, and Simon noticed his absence with a vengeance in the months that followed. His grief came out in the constant trashing of his room, and the cutting and tearing of his clothes, and he would sing sentences in chants and weep. Apart from the destruction of clothes, some of this behaviour has continued to a lesser extent to the present day. He now regularly trashes his room after any upset, and on home visits his chanting songs often lead to tears, but he never sobs and cannot explain about the tears.

Simon reacted less intensely to Mum’s death in November 2010. By that time, he had become much more reliant on me and Decia, and only visited Mum for tea every other week of his home visits. His life returned to ‘normal’ after her funeral. I took over from her as his appointee at that time.

Since I first wrote these memories, Simon has moved (in October 2013), into his own supported flat at Brandon. And I feel it has suited him better than living in community with six other service users, which would occasionally create confrontations and Simon’s ‘bad behaviour’. Living alone seems to suit Simon, with his own space and nothing to think about but his letters to young TV actors and continuing obsession with time – calendars, anniversaries and the turning of the seasons, and the signs of the zodiac.

Independent living ‘suits him very well’

Simon has been in his ‘Brandon Life’ flat for over five years and it still suits him very well. He likes the staff there who understand his condition and moods well. They are all well used to him too, and they know that from time to time he will have a ‘meltdown’ when something just happens in his mind and he trashes his flat and destroys items that he would normally treasure, or at least appreciate. These outbursts usually happen within his flat, but sometimes a flare up or some extremely erratic behaviour can occur in public – on one of his outings, in a shop, on holiday, or even at a Christmas party in a pub. I am constantly in awe of the skill and compassion with which the staff care for my dear brother.

I have recently changed his home visits to my house to fortnightly instead of weekly (suggested to me by one of his support workers), and so far, he has accepted this change very well. Apart from having to lose all his teeth about two years ago and occasional skin problems, physically he is still very robust as he approaches his 66th birthday, but due to his medication and food choices, in spite of everyone’s best efforts he is still obese, and the threat of diabetes and other severe conditions is very real. He phones me regularly (often at unsocial times), and our relationship is strong. I hope to be able to support him for many years to come, with the vital and consistent help of the skilled and caring staff at Brandon.

Andrew

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