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.

It's a perspective, isn't it?

Apparently, Narborough train station is 'literally' behind the Londis shop over the road from Workplace* House, according to Debbie*. I asked, 'Would that be a neurotypical literal or an autistic literal literal? She insisted, No, literally and waved her arms in all the right directions. The bingo wings followed some time later and continued to do so for quite a while. One of the many things 'life' has taught me is 'literal' means one thing in Autism world and another in Neurotypical world. For instance, describing someone as 'literally throwing their guts up' or 'literally shagging for England' is probably inaccurate. This theory was reaffirmed today after I cycled to the area office to work a shift in daycare. I say 'cycled'. From where I live, that would have meant a very early start so it was 'literally' from home to train station and train station destination to Workplace* House. Debbie* did insist her description of the location of Narborough station was accurate, it later transpired to have merely been a neurotypical literal. The difference between the two literals is the neurotypical, or non autistic, literal lies in its vagueness. In other words, they don't mean it. I have just overheard James May, in an old episode of Top Gear saying they were 'literally breaking records'. I pictured a fair few old and broken vinyl albums lying crushed on the race track. The autistic literal, on the other hand, tends to be absolute.

Debbie's* neurotypical literal was uncovered when I fell off my bike. I left Workplace* House and headed off for central Leicester and the train station, which was about 7 miles, or 35 minutes cycle ride away. The road had recently been surface dressed and was covered in loose gravel. In an attempt to manouvre from the road to the cycle path, I skidded on a thick layer of gravel, went head first over the handlebars and landed on the grass verge, closely followed by my bicycle. Rather like one of James May's broken records, perhaps. It then became a real life 'Good Samaritan' story as a motorcyclist making a rude gesture rode past and one or two motorists slowed down and, through open car windows asked if I was alright. They drove away after hearing I was fine, thanks. One, however, pulled into an adjacent driveway and insisted on helping. Now, if I'd dusted away all the embossed gritty bits and quickly checked my bike for damage, I would have made the 16.35 train from Leicester to home. Just about. But Mr Good Samaritan had better and more noble ideas and was undeterred by any promises of fine-ness from me. He had the back seats down in no time at all and was trying to fold my unyeilding commuter mountain bike into the back of his silver Ford Ka. Would I be able to get in the front seat, he asked. I did, and discovered the reason for his helpfulness: there was a little blue book called 'Holy Bible' in his door pocket and it crossed my mind he could be about to deliver me to a nearby inn and leave the landlord with enough money to pay for a comfortable recuperation and adequate medical care. Fortunately not, but he did drive me to Narborough train station. This is when I discovered the non literality of Debbie's* literal. It was well beyond the back of the Londis shop. He suggested I try to ticket office door while he got my bike out of the Ka. It was closed. He 'helped' me to the platform and left me in the 'care' of a very short, slightly built woman in a brown anorak who promised to look after me. She may well have said she would talk me to death, but in the neurotypical sense. The next train to Leicester was 40 minutes away and well beyond any possibility of catching the 16.35. Mr Good Samaritan reappeared on the platform waving a mobile phone above his head and asked if there was anyone I'd like to ring. I said no, thanks, I had my own phone and really wanted to shout STOP TRYING TO HELP but resisted. The only way to escape from exceptionally talkative woman was to ride into Leicester. I hit the road, but not quite in the same way as I had done fifteen minutes or so earlier. I made it to the station with literally minutes to spare. *names have been changed

Dad’s funeral Thank you so much for being here today. To stand before all of you paying tribute to a man I have known all my life is quite something and a pretty hard thing to do. You’ll know him by different names: Robert, Bob, husband and friend, even Bruv, Uncle Bob, Grandpa; he was my Dad. The privilege is a dubious one; not many people actually want to stand in front of a group of people trying to tell them about someone with whom we have all had different relationships. We saw him in different ways; you have your own memories and we’re here to share some of them. I know Dad would want you to hear what he would have called a warts and all story; not the sanitised account that only showed the pretty bits. Not from me, anyway. Let’s begin with an ending. I’m reading from Dad’s book the Presence, a Memoir of Miracles. These are his words: Before I move on to bring an end to this final chapter I feel I should share with you a few thoughts on the value of sharing: that is, on the value of sharing with others not from what we have, though that has its place, but from what we are. I would also ask you to consider that “what we are” might better be stated as “what we have become”. To open our hearts and minds in sharing with others is no small thing. It calls for courage, faith and love; for often we are called upon not to share our knowledge and our strengths, but to expose our vulnerability and pain. My dad was an author, a story teller, a man of tall tales, wide skies, high mountains and rich promises. Although he had been writing for as long as I can remember and wrote many books, it took 25 years of never giving up for O-Books to accept The Presence- a memoir of Miracles. He was about 75 when it became available but what a testimony to tenacity. When we were children, Dad used to promise us a big house in the best area of Nottingham, once he sold his book. There seemed to be nothing he wouldn’t do once he sold his book. I don't think we ever took him seriously, because he was always telling stories. He entertained us with the story about how Christmas pudding was invented; and how haggises ran around Scottish hills, with one set of legs longer than the other so the little critters didn’t fall off the mountain side; and how macaroni got its name. Just in case you’re wondering about the last one, it was a love story between a Scottish laddie called Mac and his one true love Arony. All those and other wild, outlandish, tales were always illustrated with much gusto and windmilling of arms which were at least as entertaining as Dad telling a story. It kept the bottoms of fidgetty children firmly stuck to dining chairs until the grown-ups had finished eating. He showed me how to make paper aeroplanes and nobody has ever shown me how to make one that flies further than dad’s delta winged creations. It was dad who taught me how to play chess and we'd shut ourselves away for hours. Or we played word dice games. He never let me win and thank goodness for that. It made me work hard and try harder. He was as high as a mountain and wide as the sky, was my dad. We both loved those weekend and school holiday walks with Rebel, our black Labrador cross. Dad was tall, dark and handsome, like a movie star. He strode out with purpose and it was hard keeping up with him so I had to take very long steps to stay at his side. Oh, we'd put the world to rights, the two of us. We'd paint fairy tales across the sky with those dreams of a world full of justice and rightness. He was going to write a best-selling book and I would be a leather clad, motorcycling journalist always on hand when the best stories happened. We were what you could have called 'as thick as thieves'. It was as we got older that the darkness set in and the evil shadow of his alcoholism strangled the light from his eyes and rational thought from his mind. My high as a mountain and wide as the sky dad shrivelled away in front of our eyes. I came home from a theatre visit and the house was quiet. He'd gone and with him went the dark, black shadow his illness. For mum, my sister Jane and our two brothers, David and Andrew, at least. That same night, Dad had an experience. These are his words: I had never, ever, asked anyone for help in anything more significant than the trivial, and then only rarely. Now I did and now I meant it. No sooner had the words tottered from my tongue than I was drenched in peace and love. They seemed to enter the top of my head and pass through my body, all the way down to my feet, as though they were liquids poured from a bucket. Everything; al movement, every motion of my mind, stopped in that most exquisitely beautiful of moments. There was no before, no after; time had ceased to exist. All was distilled in the clarity of that stillness. That was not all. In that doorway, sharing the space with my mother and me, I sensed a living and vital presence. For Dad, it began his climb to wholeness and health, sobriety and sanity. It was to be a long journey but he never gave up. He grew back to that high as a mountain and wide as the sky dad I used to have to stride alongside while we were walking and talking and putting the world to rights. He was a deeply spiritual man and fought his demons in a world we can’t buy plane, train or theatre tickets for. His den, home office, pigsty, indoor-man-shed is a library of religious writings mixed with those of Winston Churchill, Arthur Conan Doyle, pop-up story books and a Rupert Bear annual. More than that, it was a place of peace. His physical limitations frustrated and embarrassed him but technology became his joy and it brought him into contact with lost relatives and old friends. He enjoyed the challenge of mastering the many gadgets he acquired. One of the more recent of these was a Kindle that Joan bought for him. He had been reading The Diary of Anne Frank, a book I had, ironically, bought for myself four days earlier. He was a genius, literally; a member of Mensa. Gran and Gramps would have been proud of that. If it had been around back then, imagine what their Facebook status would have been: Our Bob’s in Mensa, he’s a grand lad. But that was the thing about Dad. He took new technologies hostage and made them work for him. He had limited use of his hands so typing became problematic but he had voice recognition software to do it for him. His voice became tired, sometimes but Dad was a problem solver. He programmed the software to recognise all of his voices: lively Bob, tired Bob, barely audible Bob. Dammit, his body wouldn’t work but his mind was totally rebellious and was going down fighting. He found family on the internet and they became so incredibly precious to him. Pol and Col became his sister and brother. Mike was his lost friend from their days in National Service. Is this where I have to tell a funny story? When Dad told me he was going to have to be in a wheelchair, I immediately remembered the scene from the Johnny English ReBorn film and bought dad the DVD. If you haven’t seen the film, you can get it in Asda or on Amazon or something and there’s an amazing bit where Rowan Atkinson is escaping in an electric wheelchair right down Pall Mall and goes under the trailer of an articulated truck. Well, when he rang me to tell me about his holiday and how he was in his electric wheelchair in this big department store and he fell asleep, hit the GO button and went crashing through a perfume counter with much splintering of glass, I had to doubt, just a little bit, the innocence of his story. Dad blamed himself for lots of things and bore a great deal of physical pain as the years progressed but his was a life worth living. He had something worth more than material things. He had a hunger, a thirst, a kind of peaceful greed, if there is such a thing. Dad had ambitions for something that went beyond. It went beyond his physical pain and emotional torment and into the spiritual dimension. It had no creed, no bias or name. He did not know what it was but he called it the Presence. Jews say Shma Yisrael, adonai eloheynu, adonai Echad. Hear, oh Israel: the Eternal One is our God, the Eternal God is One. This is the God my father believed in, had faith in: a God who encompassed all faiths, all religions, all creeds, all ages and was timeless, immeasurable and worldless. His was a God sans frontieres. Without boundaries or limits. My friends. When I think of my dad, I am a child all over again, looking up at my high as a mountain and wide as the sky dad with Rebel on one side and me on the other, striding along at his side. Call him what you like: Robert, Bob, husband and friend, even Bruv, Uncle Bob, Grandpa. He was my dad. I loved him. And Dad, I hope I’ve done yer proud.

My Gran

Why do you call it elevenses, Gran, when you have it at half past ten? Why don't you call it half past tenses? I asked. I miss my gran. Once in a while, every now and again, it would be wonderful to have one day with her again; one last day. I loved her. My brothers and my sister loved her, too, with her wobbly hands and wonky legs and how she had to come down the stairs backwards. As children, we of course imitated her genetic neurological condition, unaware of that which we copied had been passed on to us. She said seeing me being born was the most beautiful thing she had ever witnessed. Many years later, with small children of my own, Gran said I was like the daughter she never had. She had an understated way of making her grandchildren feel special and secure.

Gran always had special things, like cakes or chocolate marshmallows in foil. There was such a fabulous aroma of almondy Bakewell puddings as she pressed the tin against her chest and popped off the lid. If we timed it just right, she would sit us at the dining table while she waited in the kitchen for the milk to boil and the ritual of elevenses at half past to begin. The spoon scraping against the walls of the white china cup and saucer while mixing the coffee, sugar and blob of milk together was enchanting. The milk would boil and Gran carried the saucepan through, walking like a racehorse, lifting her feet high off the ground. She had to do that to stop herself from tripping, which is why she wore calipers on her legs when she went out and had to come downstairs backwards. The angry bubbles hissed against the sides of the pan, spitting like fighting cats. Fsssss. She had to carry it with one hand on top of the other, to steady the wobble.

My sister and I loved to go round and play. We were puppies in a garden of mischief. There was an inner lobby between the dining room and lounge. A curtain hung from a metal rail on the dining room side, which made a fabulous swishing noise when pushed aside. It was a den, a cozy place. We would lift the lid on the storage box Gran called ‘Humpy’ and dress up in the chiffon scarves, all neatly folded, inside it. Humpy was made from half an old wooden barrel with an upholstered lift off lid in brown vinyl. The cellar steps, behind a clunky door led off it. Gran had to take our dad, as a small, sleeping boy, down there during air raids in the war, while Grandpa was at work. He had been a policeman in the Second World War.

Routines. My grandparents were defined by them. Maybe that was a reason I, for one, felt so secure at their house. Predictability and a love of routine is a key element in autistic children. Without it, we can flounder and fail to function. It can lead to reactive behaviour, which most people, lacking awareness, would interpret as bad behaviour.

Gran and Gramps did not have a bathroom but they had a fridge. She bought frozen peas and they were so much nicer than the tinned ones we had we had at home and got moulds to make ice lollies for us. We had a bathroom, which was very much like a fridge in winter because nobody had central heating then. It was so cold. Running a small amount of water in the bathroom sink to see whether or not it would freeze overnight was an experiment I tried many times. It never worked. Somehow, the water was never there in the morning. Maybe the plug leaked.

Their toilet was outside, like ours. It was lined with polystyrene tiles in a cracked ice design, painted yellow. They always had toilet paper, which was somehow affirming. Special people had toilet paper. At home, we used to run out and mum would make books of newspaper and hang them from string. It annoyed me. Why could she just not remember to buy toilet paper? Many years later, I realized she probably could not afford it.

They also had a television and Gramps would watch sport on it every Saturday afternoon when Gran went shopping with her sister, down town, as they called Nottingham. My great grandparents had nine children, five boys and then four girls, one of which, Dorothy, had died aged six. Ivy passed away when I was a baby. It had been their family custom for new babies to be named by the older ones and the brothers called their youngest sister Florence Harriet but the girls wanted her to be Mary, which is how she came to have two names. Their use of language fascinated me. They would buy things like a ‘bit of cooked ham’ and said trews, or troosers, instead of trousers, which hearkened back to their Scottish mother. And they would buy apples, always Granny Smith’s because that was what Grandpa would eat for breakfast, along with a slice of bread and butter. He would always peel the apple and poke a slither through the bars of the bird cage for Scotty the budgerigar to eat. If we timed it just right, and timing was the key with my grandparents, and went round to Gran’s on Saturday lunchtime before she went into Nottingham, she might take us with her. It was boring but so was being at home on weekend afternoons. All mum and dad did was watch old movies, the kind where everyone spoke in clipped English accents and the heroine swooned into the arms of the hero. Dull. And why did they all have radiant white faces?

If we went round to Gran’s after she had left to go shopping, we would find Grandpa alone in his armchair, watching horse racing or rugby. We would have to duck under the thick blue blanket of smoke as he puffed on his afternoon pipe. He was virtually motionless and slightly intimidating, almost dangerous, somehow, without Gran there. It was his lack of engagement, his silence, which added a sinister element to him. Unless he was crossing the road, he was benign and harmless. My sister and I could climb all over his chair, with him in it, and put curlers in his thin grey hair. He would never move, or say anything. He walked like Winston Churchill, slightly stooping forward and with the determination of a veteran from somewhere and of something. He crossed the road like Moses parting the Red Sea. Lifting his walking stick high over his head, Gramps would just step right into the road and march out. It was terrifying. Cars would have to stop. Grandpa, we’re going to get run over, I’d shout but would have to follow him, anyway. It was fear mixed with trust and bouncing along behind him was slightly less frightening than being left on the wrong side of the road. Dad said he still thought he was a policeman but that was how he met our gran.

He was a widower and the father of two children when he met his future second wife. She had an older brother Harold (Bob) Bexon, a veteran of the Great War’s trenches. In the throes of a nervous breakdown he was convinced he was in trouble with the police. Gran and her younger sister took Harold to the ‘local nick’ where my grandpa worked.

Dad said, many years later, it took some time to convince uncle Bob he was mistaken but he and Grandpa became very good friends.

Gran and Grandpa had a friend with a seaside caravan sited at an east coast resort near Mablethorpe and they would go there for holidays. They took my brother David once but dad had to go and fetch him back because it frightened him. He was very small and had never been in a caravan before. Convinced it was actually an ambulance, he was unsettled so Jane and I went instead. It was totally wonderful to have the freedom of our grandparents’ attention. Their holiday routines were fairly similar to their everyday at home ones. Each morning, Grandpa would get up and walk around with his braces hanging from his trouser belt with his portly top half covered by a white, granddad vest, slightly pulled back at the sleeves. He still had his breakfast bread, butter and apple. On our first morning, I watched him place a slither of apple skin precisely in the middle of one of the large roses which patterned the plastic table cloth. Grandpa, why are you doing that? I asked. It’s for Scotty, he said. It was amazing they did not actually take the budgerigar away with them but he was safe with aunt Mary, who had one of her own, who could talk. He would say Beauty Bexon, best budgie in Basford.

Their acceptance of me was almost total, unlike it had been when dad was growing up. My grandparents were children of Victorian England and inherited its values. Strict. Children who ‘must be seen and not heard’. It stifled the growing boy, who was constantly being told to ‘be good’. Being good, it seemed, meant obeying without question or he would not have been loved. I saw quite a lot of this trait in dad towards the end of his drinking days. At least in the expectation of complete obedience; there was no ‘love’ attachment to add a glimmer of redemption or reward. Had gran and aunt Mary not had occasional issues with my tomboyishness and wearing boy’s clothes, they would have been perfect. The calm and gentle pace of their lives with its predictable routines was what made them so secure. Even their houses had a familiar, similar smell. Aunt Mary went to Gran’s for Sunday lunch every week and every week, Gran would cook casserole for aunty to take to work in a flask. Sometimes, when it got boring at home, I would wander round the corner to enjoy the ambience of my grandparents’ house, which would also become dull so I would walk up to meet aunty coming along the road. Like Gran and Gramps, she adhered to routine and would leave home, the one in which she and her siblings had been born, at the same time, using the same route. It was about a mile and a half away but the walk involved passing tall and oppressive Victorian factories, which were dark, silent and menacing so seeing aunty walking along was always something of a relief. If their sister, Ivy, had still been alive, she would probably have also been on that walk but Ivy had died when I was a baby and Gran never cried so much but never cried again.

Tears. An intense closeness developed between Gran and me, when she was dying. She longed for it, prayed for it. She spent the last two years of her life going from hospital to home, to nursing home and back. Her inability to let go of life was hard to watch and my drive home from the visits I made. The feelings of uselessness were intense. How could I make her more comfortable? What could I do to help? She asked me to pray for her, so I did, holding her hand and pouring all the love in my heart into her emaciating body. Oh, Lord, come and take me, she would plead. She wanted to cry but could not so I prayed for her to have the relief of tears pouring down her face, to soothe her. And I would read to her until the pain of hearing words became too much. She said nobody understood what it was like. So I prayed for dreams and had one. In it, she was up home, as they called it, the small mid terrace she had lived in with her parents, brothers and sisters. The one her brothers left to fight in the trenches. They all came back to leave again when they married and had families. The home, warm, loving and secure, where her father was, who was the kindest man on earth and brought her brandy in hot water to take away her period pains. In my dream, we were in the house but it was just a little different. The yellow walls were there but, in the kitchen, there was an arrangement of bench seating. Gran was sat with her back to the wall and I gave her a meal of fish fingers, peas and potatoes. Giving it to her, I asked her a question. The next day, I visited the hospital again and asked Gran the question from the dream. Do you ever wish you were back at home with your mum and dad? She said yes, I do. Exactly as it had been in the dream.

Once, I sat holding her hand and found myself stroking her forearm, very gently. Out of nowhere, I asked if her dad used to do that when she was a child. He did.

They say people with autism lack empathy. Sometimes, we feel others’ pain so intensely it suffocates and becomes unbearable so we lash out, run away; become aggressive. That is why the world, in its insistence that we demonstrate and express ourselves in proscribed ways, to fit a pattern does not understand. It therefore becomes dismissive of our difference.

Gran looked beautiful, lying in her coffin. She had no wrinkles and was at peace, at last. Jane came to tell me. There would have been no other reason for her to call that evening and I turned around in my living room doorway and said she’s gone, hasn’t she? Yes. Oh, I’m so pleased. I did not know what else to say but it was true.

Six weeks later, Grandpa died.

Deal with your baggage or it deals with you

They were sitting in their car opposite my house. No doubt I should have felt extra safe that Friday night, sleeping, knowing the visible presence of two of Derbyshire’s finest police officers keeping warm in their Vauxhall Astra with the flask of tea provided by neighbours would deter any miscellaneous miscreants strolling along. The street was quiet, at last; the fire engines had gone along with the council workers, ambulances, news reporters and road barriers. A respectful silence had fallen for Linda. Nobody knew where she was.

I had been woken that Friday morning by large, noisy, diesel engines. Presuming it was workmen about to start drilling in the road, I covered my head with bedclothes, obstinately attempting to stay asleep and expecting my attempts to be shattered by the vicious sound of a pneumatic drill. It almost worked, for about five minutes but the noise was persistent and nasty. I lifted the duvet for air and smelled smoke. Out of bed faster than an earthquake, I looked out of the window. Three hours sleep and a mild hangover from a great night out with my two sons did not need the surveyance of chaos flinging its sticky fingers at me when I opened the bedroom curtains.

Fire Fighters, like ants around jam, were tackling the blazing house across the road. Instead of the usual nose to tail cars parked along this built up, residential street of Victorian houses, I counted five fire engines and three ambulances. Police were directing residents to move their vehicles and, as I looked down, noticed a female police officer about to knock on my door. Dressing quickly, I grabbed the keys to my van and left by the back gate. A police officer moved it just around the corner on request, wholly on double yellow lines and partly on the pavement. It would have been easy pickings for PC Jobsworth to nick me for still being over the limit. Paramedics were laying kit onto large green sheets outside the houses on my side of the street, the even numbers. The burning, smoking house was number 41. Giant yellow, wax crayon, oxygen canisters with face masks beside each one lay waiting on more green sheets. It all looked very over the top. Only one woman lived in the house. One woman and floor to ceiling, wall to wall junk in every room, including the loft cavity, hampering the progress of the fire crews.

They were still there, along with news crews, when I returned from an appointment in mid morning and it looked no less busy. The stretch of road where the burning house was had been closed off. A sole police officer patrolled the blue and white tape, preventing unnecessary foot traffic from passing and asking for permission to return home added to the cloying atmosphere. Fire Fighters had begun strapping on harnesses and were going to attempt to enter the house through the roof cavity. The female resident was known as a loner who rarely went out during daylight hours and her house was crammed with years of accumulated junk, hampering the search and, equally as urgently, the attempts to bring the blaze under control. Artificial tunnels had been dug through the clutter to enable progress into the house.

By lunchtime, the story was in the online version of two local papers and BBC Radio Derby. Living in my town, on the Derbyshire side of the Nottinghamshire border, when a good story broke, it hit the headlines across two counties. Neighbours were interviewed by film crews from East Midlands Today, their sound bites re-quoted in the local press. Disturbed by the noisy activity, getting down to serious work was hampered and my frequent coffee breaks were taken outside over short conversations with the emergency teams. A strange picture began to emerge of the woman and her lifestyle, pieced together with morsels of information gleaned from these brief meetings. She was reclusive.

This is a reasonably friendly neighbourhood. People pass acknowledgements while taking out or bring in wheelie bins, or by their cars, as one person comes and another goes. As the years go by, more people with cars move onto the street and parking has become very difficult, especially as quite a few households have more than one vehicle and only two houses within sight of mine have driveways. The family living next door to the one on fire irritate others of us by leaving their brown wheelie bin in the road when they go out. The elderly widower next door to me can be grumpy and unfriendly; we have three same sex households within a few doors of each other and a young couple nearby live with their small son. My son and I had been in kick boxing classes with the mother a few years earlier, when she was single and lived in the next street. The family next door to me have had two sons since moving in and wanted to move to a house with a bigger garden. Their house was taken off the market a month earlier as there had been a shortage of viewers. One property, diagonally opposite mine, is much more modern than the rest. At around 40 years-old, it is reputedly owned by a former England goal keeper who had played for Nottingham Forest during their late 70s peak. The days before top footballers commanded ‘silly money’ and who bought detached houses in streets like ours. A regular neighbourhood with ordinary people living on it.

Even though I have lived opposite her house for over eighteen years, we have never spoken. Everyone was invisible to her. Any attempts to catch her eye, nod, smile, or make any acknowledgement were ignored yet she did not look unfriendly. She was a slightly built woman who still wore the loose fitting and wild coloured trousers of a sixties flower child. There was something remote and eccentric about her. Rarely seen out during the day, she could often be seen silently watering the front garden in the middle of the night. The shrubbery, which had been none existent when I moved in, had grown to cover the front ground floor window. At some point, she had moved wardrobes across the front bedroom windows. A man lived with her then but nobody had seen him for years. It was her husband and he had been working in Spain, according to one of the police officers I questioned. The door to door enquiries were repetitive: everyone knew who she was, nobody knew her name and she was reclusive. Three hundred years earlier and she would have been the village witch, burned at the stake. She became a real person, a missing person, when her name was revealed in the local newspapers. Linda Parkes.

The fire was out; two council trucks and a dustcart moved in to begin clearing the vast amount of debris. Everyone said the same: ‘Never seen anything like it.’ Not only could Linda have never thrown anything away at all, she must have also actively brought in more of it. When my friend moved out of number 44, he had a house sale; like a garden sale without the garage. He opened his front room for the day and sold off books, CDs and some old vinyl and was the only person I know who had spoken to her. She was, apparently, very intelligent and nice to talk to. Whatever she bought that day much have been among the charred debris being wheel-barrowed into the white trucks. My daughter said she could be hostile. Felicity had worked at the local Cooperative store for some years, as a supervisor. It was her student job, which she did very well at. She told me that Linda, or ‘that weird woman who lives over the road’ would dispute the prices on reduced goods and make the staff go and check. Then she would spend a while counting her change to make sure it was right, blocking access for other customers.

I escaped from the chaos that evening by sharing drinks with a friend seven doors up. We talked, over wine and then tequila shots about everything and nothing at all, as good conversations often go. The street between our houses was deserted. The police tape had been removed yet nobody had brought their cars back. A lone patrol car was parked outside Lind’s house, two officers inside keeping themselves warm. The purr of their car’s engine was the only sound the now eerily quiet street. It was what woke me up the next day, when more police cars arrived, along with a forensic support van and more masked and overall clad officers working from a Mercedes Sprinter van. Local residents were carrying on life as normal, often questioning the team working in the house, as I also did. Cars began to repopulate the street but the atmosphere was cloying, oppressive and dark.

On Sunday morning, two large skips were delivered, taking up parking space all over again and the forensic team carried on, clearing large amounts of debris from the house. My son was going out that afternoon and would be away until Monday afternoon. It would be good for him. The neighbours had been around to the back of Linda’s house with cameras and it was winding Martin up. Seeing so many people, who never had time for her while she was alive, now seemed enthralled by the whole drama. I decided to catch up with a friend in a village in the Derbyshire Dales. Fresh, clean air and a change of scenery was to prove an excellent antidote to the sickly smell of old fire smoke that hung around by the skips. It stuck in my throat as I spent a few minutes talking to one of the forensic officers before leaving. He had spoken to Linda’s husband that morning, he said, but denied there had been any rubbish in the house. He said he had been there six months earlier and there had not been any junk in the house. Astonished, the officer told me he could not believe the husband’s denial. He had missed the bags of human excrement in the house? He shook his head and was gone by the time I returned home.

I get up at around 6.30am for work on Mondays and saw, that week, a bicycle propped up between the skips. A thin man in a dark duffle coat and pull on hat was shining a torch in one of them, then the other. I watched him from my bedroom window. It is not unusual for passers by to peer into parked skips but this man seemed intense in his search. He then began poking through a pile of rags in the front garden. He was still there when I left for work just before 7am so I wandered over.

‘You won’t find much in there, lad,’ I said. He was back at one of the skips by then and did not even look up.

‘She was my best mate, she was,’ he replied, ‘a lovely woman. Her husband’s going to be heartbroken when he sees this, he is. She was with me till half past two that morning and as happy as anything. I walked her back round here and we were laughing and joking all the way. The police have said I’m a key witness. I’ve managed to find a couple of necklaces in there,’ and pointed to the rags under the front shrubs. ‘I just wanted something to remember her by.’

I left him to his search and went for the train.

Linda’s body was discovered at 11am that day. She had been buried under the junk for three days. According to a report in the Derby Telegraph, she had been trying to escape.

Over the next two days, a few flowers and messages were left on the wall between her house and next door, where the guy who had been interviewed by news reporters on Friday lived. The same one who had often complained to the council about the vermin and mess and who had first alerted the fire service on the Friday morning. People have to pay their respects. It had hardly seemed so when they were peering in the house, taking photographs or making sniped remarks in the online version of the local paper.

People are often unaware of the powerful impact they have on the lives of others. Linda had that effect. I would not leave flowers. It seemed a sick gesture, given that she died unable to escape from the chaos in the house. Why add to the clutter?
What was most moving was the metaphor between the obvious physical mess at the house and the assimilated internal chaos of our reclusive neighbour. We all carry burdens, clutter, and emotional baggage; call it what you might. Not one of us goes through life free of issues but it is how we take control of them that makes the difference. Linda clearly could not deal with her internal or external junk and it was the death of her, quite literally. There is a profound lesson to be learned from Linda’s life and indeed tragic end, which would not be to leave it too late to address problems before they get too big. It is possible, as Linda proved, to live hermit-like, even in a densely populated area such as mine. However much we shun social contact, our lives do affect those of others. Our personal burdens whether physical or metaphoric, impact on other people and people care. On whatever level, whether it is out of desire not to live next door to so much junk, noise or bad smells or a wish to help the clearly suffering individual.

Three weeks on and the house is boarded up. The police and emergency vehicles have been replaced by occasional men in vans, sifting through the remains of the junk. One of them looked like Linda’s husband, who has been seen at the house, his Peugeot estate car parked opposite my house. Everything that remains of Linda’s life is being slowly brushed away. May she rest in peace and the lessons learned from her remain. The unaddressed issues we all have, ignored and neglected in some foolish hope they will simply melt away, can wreak devastation to more people than we could ever possibly imagine.

A Poem About Being Autistic - for James who may understand, one day.

I originally wrote this in mirror writing, a skill at which I am now something of an expert. Reading it without holding the back of the page to the light, to get it the 'right' way round, makes for somewhat stilted reading but I think adds to the overall, monotone, impact.

----------------------------

I like clothes with pockets
so I can keep my things
all of them
all of my special things
in one place
so I know where they are.

You told me about the girl you met
and the story she told you
about the boy
who kicked over chairs.

He was autistic, you said.
When things got too much
for him at school,
he kicked over chairs.

He was LFA,
low functioning autistic.
I am HFA,
high functioning autistic.
What is the difference?
The difference between
HFA and LFA
is that LFA are more honest.
If things get too much
they scream
or kick over chairs
or hit someone
or run away.

HFA people are just better
at pretending.
We teach ourselves to smile
in all the right places
at all the right times
but we still don’t fit in and
inside we are screaming.

Oh, if you knew the rage,
if you knew the rage
that makes us
kick over chairs
or kick holes in walls,
you would be merciful.

I think LFAs are lucky.
they are no words, all action.
NO WORDS, ALL ACTION.
If they don’t like it,
they kick over chairs.

Being HFA,
or Asperger’s,
is like living life
on the red carpet
or the Hollywood walk of fame.
Everyone is looking at you,
or laughing
and saying things
you don’t understand
because you are different and
don’t know why and
inside you are screaming
and kicking over chairs
and killing people
or yourself
and running away.

Which is why
I like clothes with pockets
so I can keep my things
in one place,
my special things,
so I know where they are,
when I run away.

Sebo Felix Pet, my new vacuum cleaner

I hate housework, I have to admit but my new Sebo has been the best vacuum cleaner I have ever bought.

Having two dogs and four cats means the carpets get, er, matted, which is why the Sebo Felix Pet was such a great choice. The attachment head for stairs and pet hairs actually works, unlike those on previous cleaners which clog up and leave the brush unable to rotate. Even though the cable is shorter than I am used to and I have to stop half way down the stairs, carry the Sebo down and then start again from the bottom, it is still quicker and more efficient than previous rivals.

Its black and silver colour and racing car styling appeal to my 16 year-old son, who now quite often takes it upon himself to clean the living room carpet. Admittedly, it was he who dropped my now deceased old pet vac down the stairs within weeks of purchase. It spent virtually the entirety of its short life stuck together with brown parcel tape. It was after he accidentally threw away the cyclone filter that it sucked its last.


The great edge cleaning means it is not always necessary to use the crevice tool to clean along the skirting board. The head swivels to make cleaning around furniture really quick and easy but it has to be tried to be fully appreciated and the removable bags last for ages. I was very sceptical when the shop assistants told me this because the replacements are quite costly. However, even with as many furry friends as we have, the bag has only been replaced twice and I suspect the second time was my son's overkeeness.

My Sebo came with a detachable head for hard floors and a box of powder carpet stain remover. The only downside to this fabulous piece of German engineering is the lack of either onboard storage space for the additional heads or something to put them in.

Although it is more expensive than others on the market, it is lighter, more efficient, takes up less space and is wonderful to use. The side carrying handle makes it easy to take upstairs so, hopefully, my new Sebo Felix Pet won't suffer the fate of the last vacuum cleaner.