Tuesday 24 December 2013

The Year in Brief

    For the first time ever, I have decided to put together a newsletter to summaries my year, in brief, as many other people do. Instead of putting it into Christmas cards, this is a slightly more environmentally friendly electronic version. It also circumvents several processes; for instance, remembering to print out and post them, which can be a lot more complicated than it sounds.

    The beginning of the year saw Oliver and Felicity’s graduation ceremonies, which were very conveniently on the same day and from the same university, Derby. It was a unique experience as I had never been to one before. Even death threats would not have enticed me to my own back in 2010. Both children now have jobs. Oliver is a business analyst for a cloud company, which means practically nothing to me but it is a very fast growing company and involves him spending quite a lot of time scrutinising spreadsheets for errors. I think. He has lived in Milford with his partner, Suzie, near Belper, Derbyshire for about eighteen months. Felicity moved from her position with IMS Lettings in Derby to a new job in Barnsley. This meant she was able to move into a house with her partner, Dan.

    Martin, aka Ron, finished the plastering course he was on at New College, Nottingham (ncn) and was unemployed for a short time. All credit to himself, he secured a job as a team leader with M&S at their massive distribution centre in Castle Donington. He heads a team of twelve and has shown an impressive amount of maturity for one still so young. He is an inspiration to his team, which is quickly gaining a reputation for its great spirit, work ethic and high productivity. He recently passed his driving theory test and is due to take the practical on February 14th.

    Work wise, I am still mentoring for the National Autistic Society at DeMontfort University in Leicester. This is turning into a busy year at the university as we have more autistic spectrum students than ever to support. As always, my personal approach is as hands off as possible and I enjoy wonderful, although unconventional, working relationships with my students. For the third year, we are running the Socialeyes social group for DeMontfort NAS supported students and we regularly have six or seven attendees. This is my second year of leading the group, which now meets in a lounge in the students’ union building. Early next month, I will be starting up another group at Leicester University, which will hopefully open up more opportunities for personal growth. It is still my aim to secure a regular income in place of, or additional to, my mentoring job but have decided to no longer disclose my Asperger’s syndrome on application forms. On another positive note, I have been delivering more training and talks and hope to increase my freelance workload as it is a longer term aim to be a full time speaker and trainer, or at least to do very much more of it.

    In January, I will be working with the BBC on a documentary about autism for the Horizon programme. My part in this will be pretty small but useful to go on a CV. I still work with autism researchers around the country, mainly at City University in London.
    On April 20th, my dad died suddenly. Of course, it was very difficult at the time but, as a small mercy, work at DMU was almost over for the academic year and I took as much time away from my other, salaried, job as I needed. I helped dad’s wife out a little but, to my dismay and deep hurt, found that children of dead relatives have little or no say in any arrangements. I wrote and delivered the eulogy at Dad’s funeral, which was held in a Catholic church. For some reason, dad had been drawn to the Catholic way of worship. The incredible support from my children and Martin/Ron, especially, friends from within my Jewish community and my very patient partner, Jonathan, was heartening and very needed. I do, however, feel very let down by dad because he did not leave a will. Everything was passed on to his wife, which now means many personal items which have been in the family for very many years are probably lost forever. You can read the eulogy by clicking here. http://calling-earth.blogspot.co.uk/2013/05/dads-funeralthank-you-so-much-for-being.html#links


The demographic of pets in the family has altered quite a lot. At the beginning of the year, we had four cats and two dogs. We now have three cats and the same number of dogs. We had been looking after Simba, Felicity’s cat, until such time as she could take her off us when she moved in to her house in Barnsley. We then adopted a beautiful little tortoiseshell kitten I called Natalie, which took us up to four cats. In February, a young black and white cat moved in to the garden. Advertising him in as many places as we could think of, we eventually adopted him and he developed an attachment to Ron, who called the little guy Isambard Kingdom Brunel. In May, shortly before dad’s funeral, we took in a two and a half year old cocker spaniel we re-named Lexikate. She is a bouncy, energetic and fun little dog but nervous of men. Although she has settled down really well, Lexi can still be jumpy with strangers. Simba went to live in Barnsley and Isambard, very sadly, was hit by a car and had to be put down. Even now, we miss him. He was a fluffy, dozy dollop, with enormous paws who liked to ride around on Ron’s shoulder.


    There is little left to say apart from to wish everyone the kind of Christmas they hope for, spent with people who care for and love them. May every one of you have a great New Year. 

Wednesday 4 December 2013

It was twenty years ago now

We were driving somewhere and I looked across at him, as I often do. The topic of our conversation escapes my memory now but travelling makes a good picnic rug to spread our chatting across. It could have been friendly and jovial banter or a flat discussion over our destination but it was one of those moments when the realisation of how lucky we both were to be there at all struck me. He was sixteen and the likeness of his father stretched across this adolescent’s entire presence from his physical appearance to his build and occasional, very slight, almost unnoticeable mannerisms. Had nature been at war with nurture over him, the victor was obvious in everything about the son of the man I had loved so intensely. A different kind of writer would have described the changing light across Edmund’s strong Arabic features, the music from the van’s CD player and the way the landscape changed as our journey ate up miles of motorway while daylight faded into dusk. But I am not a person to draw vivid pictures of something I cannot remember. It was unimportant at the time. He was there, my son; that was important. Most people get those moments. They see a universe in a blink; an instant where a hundred thoughts and pictures flash a fast rewind, covering years of similar situations. In German, they say augenblick, meaning, literally, eyes view. The almost audible slap of celluloid against the mechanism of the cine-projector as the reel comes to an end snaps us back into the present. The roll of film was again stored away in the metal, mental tin of our memories. We were probably taking the dogs somewhere different. They were safe in a pen behind the rear passenger seats. In its former life, it was an AA recovery van, bright yellow and easy to find in a car park. It still had a panel of dashboard buttons alluding to its days of noble rescue. To steal a modern day expression, it was my lifestyle option. Good for a keen camper and dog owner. Vandelion, as I called it, could be easily swept clean with a yard brush and mop. There was a deficit of crevices to acquire dog hair and other debris that grind into the velvety upholstery of modern vehicles. Like my house, the van was rarely clean and hardly ever tidy. It shouted fridge magnet humour: dull women live in tidy houses. Perhaps interesting ones were, by default, middle aged and drove bright yellow vans, who liked flicking the switch to turn on the imaginary overhead hazard lights were still present, correct and twirly. When I first bought it, a favourite prank was to show friends those dashboard lights, where each one had a different picture to illustrate its former function. This one jump starts cars with flat batteries, this one operates the rear hazard lights and this one is for the overhead hazard lights, look, I’d say, pointing to the roof then laugh like a seven year-old schoolboy when they checked.
   My son, how different would our lives had been if you, you giant lump of a teenager with your clumsy walk and dinner plate hands, had been adopted? That was the thought which zigzagged across my consciousness that day. It often did. The thought was there and in a flash was gone again. What kind of family would he have been given to? Would they have been ‘respectable’, middle class professionals or an ordinary working couple, infertile and desperate for a baby of their own? Would they have been somehow better equipped to carry on fighting the unjust system which almost took my boy away? Would they have been listened to more seriously than I when he began to have problems at school and obtained his Asperger’s syndrome diagnosis earlier? Maybe they would. Or perhaps his later difficulties would have been attributed to his early childhood traumas and blamed, in part, on the mother who would not give up. Edmund Robin Alexander was born at home, 25th October, 1993. My waters broke to the Eagles’, Hotel California. Up ahead in the distance, I saw a shimmering light, went the song. He was a strong, solid baby of eight pounds, six ounces and did not look like one of mine. His red face and thick, dark, hair was a sharp contrast to my older two, who had been born blond, fair skinned and much smaller. They had a different father and although I should have expected my new baby to look dissimilar, his ruddy, Edomite, appearance was quite a surprise but he was handsome. His dark skin and plentiful hair was commented on by people we met in the street. More than once, someone would say, He’s going to grow up to be a right heartbreaker, that one. I did not have to wait very long.
    It was December 4th, a Saturday evening, when Edmund fell ill. He was five weeks and five days old. For a few days, I had fetched him in the morning from his cot to find his nightclothes and the bedding around his body, damp. In himself, Eddy seemed well enough, although he had been bringing back more feed than usual. My plan was to keep an eye on him over the weekend and take him to see the Health Visitor on Monday afternoon. Rowan and Holly, my older two children, were with us that Saturday and we had all been out with Dave, Mike’s younger brother who was visiting from Australia. We had been for a walk along the canal and visited a record shop in the next small town along from where we lived. It was all very ordinary, pleasant and with the bonus of having all three children for the whole weekend. On this particular night, I had gone upstairs to run a bath for the baby. Holly, who had enjoyed preparing for her brother’s birth liked to wash and play with him in the bath. Before he had been born, the two of us used to share a bath on the nights her and Rowan stayed over. Holly was a sweet and very bright little girl and she liked to wash my tummy. I’m washing the baby, she would say and then talk to him through my naval, as though it was some kind of human microphone. She came with me to undress and get in the water while I went down to fetch him. Mike and ten year-old Rowan were downstairs with the baby while I settled Holly in the bath. Mike was vigorously jiggling and trying to pacify the crying Edmund but calmed as soon as I took him from his father’s hands. Mike had always played very roughly with his baby son, often making him cry. It was his first child and his experience of babies was extremely limited. He would throw Edmund up in the air, catch him and pull him downwards. The ceilings in our late Victorian house were very high and Mike interspersed the throwing game by holding Edmund above his head and twisting him from side to side. As much as I was uncomfortable with this, I tried to balance showing Mike how to hold and play with such a young baby while supporting his interactions with him. It had been clear from Ed’s very earliest days that Mike was finding fatherhood a struggle. He seemed to have no concept of appropriate handling, especially when his son cried and seemed almost jealous of the attention he needed from me. When he cried to be fed at night, Mike, to delay me getting out of bed, would often hold on to me. Holly played in the bath while I knelt on the floor to undress the baby. The neck opening on his sweater was very tight, which made it difficult to remove.
    It was when I pulled it over his head that he went limp. He turned into a rag doll, with no muscle tone at all. His complexion had turned grey and he was clammy. Had his breath not been coming in loud rasps, anyone would have thought he was dead. Time slowed to a crawl. Ed was clearly unwell. I thought putting him in the bath water with his sister, he would revive but Edmund was unresponsive. It was incredibly difficult balancing a lifeless, larger than average five week old baby, on my forearm but I carefully lifted him out of the water and onto a bath towel. His bowels opened spontaneously and a feeling of horror began to spin around the small bathroom. My actions, thoughts and feelings were at war, pulling away from each other yet sucked, at the same time, in a tornado of fear and horror. To this day, the memory of it causes feelings of nausea and heart palpitations. My daughter, just about to turn five, was happy in the bath, unaware of my concern for her little brother. She could have been a continent away, or on another planet in a world somewhere else. Her splashes and laughter were a brutal contrast to the limp baby in my arms. Wrapping a clean towel around Edmund’s body, I put him on the bathroom floor, safely out of the way. I thought about Mike and how he broke everything. Now he had broken his baby. I went to the top of the stairs to call him. He came up and took the baby from me. Even he could see something was dreadfully wrong. He passed Edmund back and went to phone a doctor. We had no home phone so it meant making a short walk to a public telephone box. He came back saying there was no answer so he had called the emergency service and an ambulance was on its way. Holly was dressed in pyjamas by the time it arrived and Edmund had revived a little, gaining some colour and had stopped the awful rasping breathing. As a precaution, the paramedic suggested taking him to hospital to be checked over. Mike took Rowan and Holly to his mother’s house, as we were probably going to be back late and could spend the next day together. I dressed Edmund in a snowsuit to keep him warm and held him in my arms in the back of the ambulance. Why were there no child seat restraints? What if the ambulance crashed? How was a baby, held only by its mother ever going to be safe should there be an accident? At the hospital, nothing was making any sense and everything was confusing.
    Edmund was naked on the examination table. Ludicrously happy cartoon picture curtains separated us from the chaos of children’s accident and emergency and the kid with broken bones sticking out of his leg. Eddy’s high pitched squeal was piercing and painful to hear, time stopping. Was this my baby? Edmund, my Edmund, wonderful and dark and handsome, was making noises from some black and white Hitchcock movie. It was unreal. He was thoroughly examined by a female doctor who never once looked at me. Her questions were relentless and routine. How long had he been ill? – About three or four days. Had he been vomiting? – No, just bringing back a little more feed than usual. Had he had any knocks or bumps or been dropped? - No. Only that he’d somehow managed to flip himself from his tummy to his back a few days ago and knocked his head on the floor. She rejected that without turning her head. A baby of that age would not be able to do that. Yet he had, twice. Hadn’t I noticed his fontanel was raised? – Yes, but I did back not know this was unusual. Edmund had a lot of features alluding to his mixed race background. How was I supposed to know what was and was not normal? Having three children made nobody a paediatrician any more than having monthly periods turned a woman into a gynaecologist.
     Although it was, by then, late at night, children’s A&E was packed with hurt and ill youngsters. Edmund needed further tests. We had to stay. I was given a fold out bed to sleep on, in a goldfish bowl cubicle, which had glass walls behind more ridiculous curtains, which kept us from the nasty lights of ward E37 and the horrible world beyond. The couple in the adjacent bay also had a baby son. It was a relief to have somebody to talk to who did not pound me with relentless questions. They told me their little boy, who was around the same age as Edmund, was not feeding properly and failing to gain weight at home this was their second or third stay in hospital with him. Mike went home because there was no space for both of us. Worry, and the sound of other babies crying, made it impossible to relax, let alone sleep. When he returned the next day, after taking my children home to their father, he brought clothes and a toothbrush with him.
     The next few days brought more news, some bad and some good. Edmund was a very ill baby but was not going to die. It seemed contradictory to hear his condition was life threatening but his life was not at risk. It made no sense. We were moved to a large, private room. Between the Monday after Edmund’s admission and the following Thursday, he was subjected to more tests. He had to be x-rayed. They were checking for broken bones. I could not understand why they thought he might have any. Mike held Edmund as I could not bear to. The ultrasound scan was taken through Edmund’s fontanel, the ‘soft spot’ at the top of his head. He wriggled and cried until Dr Jaspan, the radiographer, suggested I feed him. It was very uncomfortable having a stranger so close to my breast while I held my baby still.
    For the MRI scan, Edmund had to be sedated to keep him absolutely still. It brought back memories of the incident in the bathroom when he was unconscious and grey. He looked tiny and everything was tragic yet comical. My baby, on an idiot supermarket conveyor belt leading him into the open, washing machine mouth of the scanner as it took pictures of his brain, slice by slice. He could have been dead, like Trina’s baby, going into the greedy mouth of the furnace, at the crematorium, only without the oblong, wedding cake, coffin to hug and hold him. Somebody must have ripped her open and torn out her soul when that tiny box, with her dead baby in it, went behind the curtain. She had wailed, out loud, the unspoken, wordless, song that which now filled my head but could not escape from my throat, my soul, my heart. The staff were very good and the nurses kind. There was a washing machine for parents’ use. I could wash our clothes and there was an endless supply of clean nappies. We just dropped the shitty, terry towelling, squares into a bin and took clean ones from a shelf. There was also a cupboard full of children’s clothing we could borrow. Mike brought in my camera and I have a photograph of Edmund dressed in one of the romper suits he looked cute in. It said ‘Little Artist’ on the front. We had use of a big blue, coach built Silver Cross pram we used to rock him in on the ward and transport him to other departments for the endless tests and x-rays. We also took him for walks in and around the hospital and grounds. Even very young babies should have fresh air.
     The University Hospital, Nottingham was opened by her Majesty the Queen in June 1977, the year of her Silver Jubilee. The collection of corridors is made of four quadrangular blocks, named after the points on a compass and joined in the centre. Edmund was in E37, which denoted the floor we were on in the East block. It was possible to go from floor to floor and along almost identical corridors to get away from the oppressive atmosphere of the ward and the sound of other peoples’ children crying. I felt very deeply for the other parents but I wanted the tests to end and for Edmund to get better so he could come home. Edmund was found to have bilateral subdural haematomas; bleeding under the skull, on both sides of his brain. Jonathan Punt, a well known neurosurgeon, was brought in to carry out the treatment. Edmund would need to have a syringe inserted through his fontanel to have the excess fluid drawn off at least every other day. Taps, they called them. I was not allowed to be with him. They would not sedate Edmund to carry out the treatment. It was necessary to shave the hair from the front of his head, and immobilise him by wrapping him tightly in a blanket. Somebody would have to hold him down and it was Mavis, the nurse allocated to us a key worker, who carried Edmund into the side room. I waited in the corridor and it was the only time I cried. His shrill screams pierced my numbness. When he was brought out, I saw through the door the trolley which held the surgical tools. On it were five full specimen bottles of blood stained fluid. How could all of that have come from one baby head? The bones on his skull were clearly visible and his fontanel was collapsed. He had two stitches, one on either side of his head. Stiff with blood, they looked like the knots in barbed wire. His scalp was stained yellow from the iodine and he looked tiny, fragile. I cannot remember how many times he had the treatment but the fluid they drew off grew less each time. Had it not worked, he would have had to have had shunts put in his head to draw the fluid away from his brain. Edmund has his hair close shaved these days and, after he has it cut, the little white scars are still there.
     Time, in hospitals, works very differently to that of the world outside; often too hot and never really dark, it was only by the ward orderlies letting themselves into our room at the same time every morning and routine temperature checks that let us know it was another day. We knew night was creeping in when the external windows slowly turned to mirrors, reflecting everything in the room with startling clarity. I had been away from the room but not for long so it was a surprise to see Mavis sitting there. Dr Terence Stephenson was standing by her side. They were solemn and motionless; they could have been a Victorian couple posing for a photograph. It was startling. When they said Edmund’s was a non accidental injury I was confused. In my mind, it was pretty much the same as a non event. If he had not had an accident, then he was ill, would get better and I could take him home. Why then, were they saying the police and Social Services were in a room opposite, waiting to interview me? Stunned and with no time to prepare or dress more suitably, I took a long glance across at my son and crossed the corridor whose floor, it felt, had turned into a river racing along the bottom of a canyon.