Friday, June 6, 2008

My brother, John by Jacquie

I am writing as the sister of John, who was born in the North East of England in 1958. John is my younger brother by five years. I was so excited to have a baby brother and can remember his homecoming. My dad, being the archetypal macho Northerner that he was, typical of this era, went out and bought John a pair of boxing gloves and a train set, obviously expecting his son to be a chip off the old block.

John was a beautiful, blonde baby with huge blue eyes. He was seemingly 'normal'. He walked and talked at the expected milestones and, in hindsight, the only clue that we had of any differences in his development was that he was exceptionally clingy to Mum; he was scared to venture across the doorstep (he would scream) and would not engage with anyone else. John loved his building cups which stacked one on top of the other and I had fun building them up and knocking them down. John, however, was disinterested in this, preferring to place each coloured cup around the room. If they were moved, or one was lost, he was inconsolable for the whole day.

My mum was concerned at his clinginess to her but our GP dismissed her worries as those of an over-anxious mother. At the age of three, John had normal verbal skills and his memory seemed phenomenal. He could recite all the road signs in the highway code without error. However, he was extremely wary of other people, always avoiding eye contact and getting increasingly difficut for my mum to manage. He had tantrums which became worse as he struggled to make sense of his world.

When he was five years old I remember him walking the street with a large, toy red bus set at an awkward angle to his temple. The bus was pointing skywards and he was looking into the bus. We could make no sense of this at all. He did this frequently and he also had a fixation about spires, steeples and television aerials. The building cups, for him, now represented local churches and we knew that there would be trouble if we moved 'St Barnabas' or 'St Paul's'.

One day I took his bus, put it at the funny angle on my head just as he did, and tried to see what he was looking at. I discovered that he was using the reflection of the bus windows at a strategic angle to look at roof aerials. As he walked along the street he got a moving personal picture show of every rooftop aerial and telegraph pole. It also meant he did not have to strain his neck by looking up for significant periods of time. John's world was mapped by these projections and they are still fundamentally important to him. He was disinterested in people and when later he realised that other families lived in the other houses on our street, he would need to know what colour the mattresses were on their beds. His first comment when introduced to someone used to be, 'What colour is your mattress?'

At home, I learned that if John was calm and happy then so were the rest of my family, and my dad was less likely to get angry. Dad's anger could be quite terrifying.

Perhaps to help cope with the underlying tension at home, John developed an alter ego called Jonnie Comics. If John had done anything wrong, then Jonnie Comics was to blame. Jonnie Comics was around for a couple of years. Mum knew there was something wrong but no-one listened. All her fault, they said: she is too sensitive and is an over-protective mum. The other kids sensed he was different, too. He was starting to become a victim but I was always on red alert, being the older sibling. I got into numerous scraps because no-one hits my brother; it's not allowed! Besides, Dad had shown me how to use those boxing gloves he'd bought for John.

When John started school, he seemed to be unteachable. He would not settle, and at last people took my mum's concerns seriously. Psychiatric assessments followed and questions were asked about our family dynamics: was I jealous of my brother (nothing was further from the truth)? Was he like my dad, a volatile character? My mum queried the times she had seen my dad clip John across the head, which parents often did then - it was accepted and I had had more clips than anyone. They never really hurt and Dad was usually sorry afterwards.

My dad retreated to the pub, full of guilt that maybe his son's handicap was a direct result of his own actions or that John had inherited his own so-called madness (my dad was rarely able to control his anger and was nicknamed Mad Ted). It was, sadly, a time of sheer ignorance. Words like autism, psychotic and schizophrenic were bandied about with no true understanding of their meaning. Certainly they held no real meaning for us.

John attended a children's assessment unit for six months as a weekly boarder and as a result was offered a place at a special needs boarding school in Gloucester, under the Rudolf Steiner foundation. John seemed to take easily to living away from home. It was Mum who struggled to let him go. We accepted that he was mentally handicapped; someone had mentioned the word 'autistic', which accurately described a great deal of John's behaviour.

My mum went on to have two more children and John would come home for the holidays. However, she struggled with his constant, repetitive behaviour and questions. On the plus side, John was getting better developmental skills and could play the glockenspiel and piano if he was in the mood. He did it instinctively, playing any tune with one hand. On the minus side there was always an undercurrent of despair at home that was not openly expressed. There was still blame and tension, and John was increasingly aware that he was different. He would ask why he had to go away to school, unlike his brothers and sisters. He asked if he was handicapped. What did handicapped mean? Would he ever get married? We skirted round these issues, never fully dealing with them because we did not know the answers ourselves, really.

John was manic, always anxious, often difficult. Thank heavens for the Beatles, 60s music and the pop charts. John loved, and still does love, all 60s music. He can tell you instantly what was number one in July 1967. He would listen to music for hours and this became our saviour. He was also becoming a very handsome young man who was starting to attract female attention but he was totally disinterested. As far as I know sexuality has never been a part of his world, then or since.

As he grew up, John was fortunate to be given a place at another special needs institution for teenagers in Bristol. All this travelling to and fro gave him another fixation - railways. He loved the trains, lines, stations and anything else to do with railways. He seemed to be doing well, but then our mum died at the age of 47 after two horrendous years with a very uncommon cancer. John did not attend the funeral. He very matter-of-factly said that I had taken Mum's place now. No emotion. Dad now had an 11 and 13-year-old to look after and I was newly married with my first child, who was just one year old. Dad struggled, so I did, indeed, take on the role of mum to all.

I managed to get John into a village community for people with learning difficulties for a few years, which was closer to our home. Although it was great for him initially, he became increasingly withdrawn. After all, where were the rooftop aerials in this picturesque village? Why should he care about the cows? (Once, he let them all out of their field and still thinks the police will come and get him for that, no matter what we say.) As we all do as teenagers, John was struggling to make sense of who he was, and was starting to suffer from depression.

His depression worsened and he was placed in a mental institution. Just being there with some severely damaged patients had a distressing affect on John. I was aware that it would and tried to get help, but was not taken seriously. John then jumped out of a window and sustained a serious head injury. His psychiatrist was quick to ring and stutter about it not being his fault and I was not prepared to go down the blame route. I had had enough experience of the damage and negativity that this brings. Instead, I changed his psychiatrist and gave my word that John would never go to that institution or medic again. I kept my word. John was, thankfully, then properly looked after by a great team of professionals who still review and assess all aspects of his life, in particular his medication, which controls his mood.

John is now 49 years old and lives in a hostel for vulnerable adults, where he is happy. The hostel is run by a woman who is very capable and enlightened and who understands her residents' individuality as well as managing their safety. John can come and go when he pleases and can frequently be seen in the coffee shop or the local pub, where he has an orange juice whilst listening to the jukebox. The hostel is in a village at the edge of town where people have known him for 15 years and he considers it home. He has come to terms with his handicap. He understands that he needs some assistance with daily life and routines. He understands that it may be difficult for him to marry as he would struggle with the practicalities of having a wife, but we never take away his hope. His hope is that one day he will have a place of his own. I will never take away that hope but I do tell him it is unlikely.

When he comes to stay with me for the weekend he now holds my hand for a fleeting second, tells me that he loves me, and says that he misses Mum but that I have taken her place. He loves the bedroom on the third floor of our house where he can look out at aerials while listening to 60s music.

A few years ago, he had a special 40th birthday where he gave a speech of thanks to everyone and sang with a friend accompanying him on guitar. He was amazing. Dad, who never really accepted him or understood, cried.

I have just given you a snapshot of our journey with John. When I would meet people who did not know about his condition, I would always introduce him as my special brother, so that they could be alerted early to save any potential embarrassment. John said to me, "Why do you say that? We are all special, aren't we?" So I now introduce him simply as my brother, John.

The important message that I would like to convey is that John has developed so much emotionally and continues to develop and learn - we don't know what his limits are. Once I fully accepted John for the wonderful person that he really is and stopped worrying about other people's issues with him, we started to enjoy life more. Society now is much more accepting. For example, buying clothes for John used to be a nightmare - he hates it. But in the last few years staff in shops have been fantastic and so helpful, particularly the younger ones - things just keep getting better. As a family we have faced considerable adversity but we have also been lucky, with excellent support from some professionals and good people along the way. I am privileged to have John as my brother and I love him very deeply.

By Jacquie

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