Читать книгу Not Stupid - Anna Kennedy - Страница 9

Looking at the psychotherapist’s report, I felt a rush of blood from my feet going straight to my head. ‘It says here my son’s got Asperger Syndrome.’

‘That’s right, Mrs Kennedy.’

‘Well, this report says it was diagnosed three years ago – this is the first time we’ve heard anything about it!’ I was incredulous. How could this total lack of communication over such a vital diagnosis possibly have happened?

Ever since his traumatic birth, our son Patrick had endured poor health, and his experience of life in his nursery school and, later, in a mainstream school had resulted in copious tears and frantic tantrums since day one. Now at last we knew why.

‘Why didn’t anyone tell us this before?’ I demanded.

‘We just assumed you knew.’

My husband Sean and I were attending an annual review at Patrick’s school in 1997, in Hillingdon, northwest London, to discuss his progress – or, should I say, his significant lack of it. The head teacher, Patrick’s teachers and the educational psychologist present at the meeting didn’t know what to say to us when they realised no one had had the foresight to inform us of Patrick’s condition.

To be honest, the rest of the meeting was just a blur and I was unable to concentrate on anything being discussed because I was selfishly thinking, Christ, both my boys have autism! This is terrible. What have I done wrong?

When we arrived home from the school it soon became obvious that Sean was reluctant to talk about Patrick’s condition at all. Instead he preferred to discuss ways to get back litigiously at the doctor for failing to inform us when Patrick had been originally diagnosed.

All this was in the wake of learning, shortly earlier, that our younger son, Angelo, had autism. At the time we had known nothing of the condition. If I remember correctly, my first instinct was to wonder how long Angelo would live and I had immersed myself in a quest to find out as much as possible about the condition, with varying degrees of success, ever since. At least the literature I had recently read had given me some idea of what Asperger Syndrome was.

Nevertheless, the news that Patrick had it made me realise that my dreams of one day having children of my own and a carefree life were turning out to be a far cry from what I had hoped. Because my own childhood had been so regimented, I had been looking forward to a more relaxed way of life when, eventually, I would settle down and have a family of my own. I’d had dreams of days on the beach with my kids building sandcastles and having fun. Now all those aspirations seemed like a distant memory.

I decided to speak to the consultant paediatrician at Hillingdon Hospital to find out why we had not been informed of Patrick’s diagnosis three years earlier. The paediatrician insisted he had, indeed, informed us of his diagnosis at the time. ‘I think we would have remembered something like that if you had,’ I replied angrily.

My only recollection of that particular meeting in 1994 was that the paediatrician had said, ‘Your son has got very difficult behaviour’ – and that he had recommended we send him away to a residential school, but there was no way Sean and I would even have considered that, particularly as Patrick was only 4 years old at the time.

Sean and I now found ourselves setting out on a new path in life that would, over the following years, see us embroiled in a long and drawn-out lobby with the civic and education authorities as we battled to provide our sons with the same rights to an appropriate education and way of life as other, more ‘normal’, children have.

There’s no doubting that a diagnosis of any of the conditions in what is known as the autistic spectrum would plunge any family concerned into a deep sense of crisis – and we were certainly no different. As with most people, our knowledge of autism prior to Angelo’s diagnosis had been practically nonexistent and we can now recognise that what many people can see only as a naughty child can be anything but the case. We had now entered a world where only those directly affected can truly appreciate the difficulties and barriers that need to be overcome.

Autism, we discovered, affects around 520,000 people in Britain. The condition, a brain disorder that impairs the ability to relate and communicate, is unrelated to intelligence. In fact, the autistic spectrum includes both highly intelligent individuals and others with severe learning needs. People with autism face difficulties in interacting socially. They have poor concentration and, in some cases, can display disruptive behaviour, which many observers unfamiliar with the condition often put down to naughtiness. Hopefully, this book will go some way to explaining what autism is all about, will reassure parents of children recently diagnosed with the condition, and hopefully, educate those who do not fully understand all the difficulties faced by sufferers and their carers.

There are several instances in my past that have had a profound bearing on my personality and that have shaped me into the type of person I am today. At the very least, the following few pages will illustrate why, to me, barriers are there only to be broken down.

It was back in 1984 that I first met my husband Sean. It was not long after my family had moved back to Middlesbrough from Italy – an unplanned return following the destruction of my parents’ home by an earthquake in Monte Cassino.

The earthquake had been an extremely frightening experience. My mother had just persuaded me, a teetotaller, to try a glass of Cinzano. As I sipped it, the walls shook and saucepans and pots began falling onto the floor. My sister Maria Luisa began screaming, then jumped on top of me and flung her arms around my neck in blind panic. I could hardly breathe. Mum prised her off me and we all hurried down the stairs as they were splitting apart under our feet.

As our home shook even more violently and began to disintegrate, we rushed outside into the piazza. During a smaller, subsequent earthquake, I saw the nearby church become badly damaged and saw mannequins crashing through the windows of the shops.

I was 24 years old when we returned to the northeast of England. Given the chance, I would have loved to remain in Italy to continue running the successful dance school, Scuola de Danza de Anna, that I had set up on our arrival in Monte Cassino three years earlier, but my father, who is Italian, was having none of it. As far as he was concerned, the family – my mother, brother Tullio, Maria Luisa and I – would all return to Britain straightaway. I was gutted. My dance school had taken off really well and had the added selling point that I spoke English, so the kids coming to classes could improve their language skills at the same time.

Back in Middlesbrough, when I was 25, I found work in the office of the Whinney Banks Community Centre during the daytime and worked teaching dance to teenagers with special needs at the centre in the evenings.

One evening, as he rushed into the building, I noticed a young man wearing a Crombie coat, green socks and Dunlop trainers. He had what I would describe as a Jackson Five fuzzy haircut and a thick, bushy beard. He ran through the building and dashed up the stairs three or four at a time to where the yoga classes were being held.

He returned the next day as I was sitting in the lounge area during my lunch break. I must have been sitting very upright in my chair when Sean approached me. ‘Have you got a rod up your back?’ he asked. I just looked at him. What a strange guy! He sat down and stroked his beard.

‘Do you like beards?’

‘No,’ I replied as I turned my head away and ignored him.

‘OK,’ he said as he got up and off he went.

He was back again the following day, minus his beard. He looked at me and was obviously waiting for me to say something, but I didn’t. Then he started chatting to me. I have to admit, I really liked his eyes and the soft tone of his voice, which was surprising coming from such a big chap, who turned out to be a former rugby player – Sean was around six-foot-four tall and weighed around 18 stone.

After a while I got up to leave. I needed to be at Kirby College to attend a dance class to learn a new routine that I’d never tried before. Sean asked if he could walk me there and, on the way, he asked me for a date. I declined, concerned about what my father would say – even when I was 25 years old, my father strongly disapproved of me dating; the same went for my sister. Dad was so strict that if I was watching a film featuring a scene with a couple kissing I would be told to turn my head away. I was still doing so at 18 years of age because I’d been so conditioned by him. How crazy is that!

As a child, I hadn’t been allowed to go to friends’ houses to play. I’d been living such a sheltered life. From the ages of 13 to 16, I attended a convent school, where I took GCE O-levels and CSEs (Certificate of Secondary Education, which preceded the General Certificate of Secondary Education, or GCSE, in the UK) in French, English, needlework, domestic science, religious scriptures, maths and Italian. At the time I was incredibly naïve. After leaving school, I had, at the age of 16, my first experience of death and feelings of loss and despair when my friend Karen, who was also 16, died from a brain tumour. I found her death very hard to handle and to come to terms with.

I never dated at all until I was in my early twenties. When it came to boyfriends I’d had to be sneaky in case Dad found out. I had to pretend I was going to run an errand for my mother in order to get out of the house because Dad had such a controlling influence on us all. I think he was scared that my sister and I would be taken advantage of.

On leaving school at 16 I had wanted to enrol at Kirby College in order to learn to become an interpreter, but Dad had ripped up my application form. ‘Good girls stay at home,’ he’d insisted. When I was 17 my mother had a word with Dad. She told him I shouldn’t be hanging around at home all day. If I didn’t go to college he should let me go out to work. He reluctantly agreed and, after an interview at the Binns department store, I was taken on in the lingerie department, which necessitated my attending Kirby College one day a week to undertake business studies, so I did get there in the end.

My only escape from such regimented order came in the form of dance. When I was a young child, my mother had taken me to the Mavis Percival Dance School and it was there that I felt truly free to express myself. In a way, I was like a free bird when I danced – even though Dad tried several times to stop me going. As I’d grown up I’d enjoyed preparing for dance competitions and shows. I loved tap dancing but I also had to do ballet, which, to be honest, I hated. I much preferred fast-tapping jazz routines – ones you had to attack. I’m not a smoothy, floaty person. That’s just not me. But the ballet was a necessity if I was to improve my posture.

After working at Binns for 18 months I decided to open my own dance school. I’d studied for my teaching qualifications and was pleased to pass with 96 points from a possible 100. After helping my own dance teacher for a while, I began taking classes of my own in a church hall in Middlesbrough. At one time I had a hundred pupils. It was a very satisfying experience but, after I’d worked at Binns all day, dancing in the evenings meant I was always knackered! I had to choose between Binns and dance classes – so I chose the dancing.

It was only natural, bearing in mind Dad’s strict manner, that, when Sean asked me out for a date, my main concern was of Dad’s reaction, should he find out. But, when I declined Sean’s offer, he refused to give up, even when I explained my reasons why. Sean told me he would meet me in the nearby Debenham’s store and that I could use the excuse of running an errand for my mother as an excuse to get away.

It was absolutely pelting down with rain as I made my way to Debenham’s. I was convinced Sean wouldn’t be there, but there he was, wearing a smart suit and holding an umbrella. I was nervous. Although I’d already secretly seen a few boys in the short term, my first date with Sean was in the wake of a bad experience with one boy that had really scared me, mainly because I had been so naïve at the time. Sean, on the other hand, was quite forward and not shy at all. After chatting, we were surprised to find out that we had attended the same school in Middlesbrough and at the same time, although, to the best of our knowledge, we had never met.

Within three weeks Sean had asked me to marry him. At the time, we were in the house he shared with his mother, Coral, and his Aunt Pam. Sean had even cooked the meal for the occasion. A week later he took me into the town because he wanted to buy me a ring. It was now time to break the news to my family, but, when we got home, we discovered that Maria Luisa had been rushed to hospital with appendicitis, so it was obviously not the most appropriate of times to share our news. Instead I went straight to the hospital to see her.

However, the time eventually came when Sean was to be introduced to Dad. It was a complete nightmare. Everyone was nervous and Mum was baking for England. I’d already primed Sean to say all the things I thought Dad would want to hear, but it very soon became obvious that Sean was his own man. No one was going to tell him what he could or couldn’t say!

I was cringing as Dad became angrier and angrier. There were long silences, interrupted only by Mum frequently asking if anyone wanted more strawberry cakes. The meeting was a disaster. Dad was completely unimpressed, declaring, ‘He’s not going out with my daughter!’ Consequently, further meetings between Sean and me had to be clandestine.

I was heartbroken when Sean left Middlesbrough to attend Brunel University in Uxbridge, northwest London – and so was he. On arrival in London he rang me to say he’d get the first bus home to be with me again, but I persuaded him to stay. After four or five days, however, I was missing him so much. My Aunt Anita could see how low I was and said I should just pack up some things and go to him, that at my age I shouldn’t still be under Dad’s wing. Although I only had around £20 on me, I took the train to King’s Cross, where Sean was waiting for me on the platform. It was so good to see him again.

Sean had been sharing in a boys’ bedsit, so he had to smuggle me in to his room, where we shared a single bed. Considering Sean weighed 18 stone, it was cramped but fun, and I had to hide my clothes so the cleaners wouldn’t find them.

Moving in with Sean was a scary experience for me, bearing in mind my complete inexperience with boys, but things went quite well and, after a time, I found work, first in a Woolworth’s store, which I hated, then at Sanderson’s, a textiles manufacturer, as a supervisor in the orders office, where my language skills came in handy. I even managed to get my dance classes up and running again. Meanwhile, Sean, who was studying biochemistry during the day, found night work in a nearby Tesco supermarket to help make ends meet.

My move south to London angered Dad so much that he wouldn’t speak to me for six months and even my sister wasn’t best pleased with me for leaving her behind. Mum, apparently, had cried when she found out I had gone. Because I hadn’t the heart to tell her I’d moved in with Sean, I told her I was sharing a bedsit with four other girls. The trouble with lying is that you need to remember what you tell someone, and this cover story meant I had to make up and remember the names I’d made up for my imaginary friends whenever I spoke to Mum.

It wasn’t the best way to start a relationship, but Sean and I were happy together and, without telling our families, we married at Uxbridge Register Office in front of two witnesses we didn’t know on 24 September 1986. We moved out of the bedsit into married quarters at Brunel University and, not long afterwards, moved again, this time into a shared-ownership house in Uxbridge. It may have had only one bedroom, but we were so excited when we moved in.

Then, in 1989, I fell pregnant. We were delighted. This was meant to be the start of a wonderful experience for us both, but little did we anticipate the heartache and traumas ahead of us that would have such a devastating effect on our family.

I had always hoped to have my first child before I reached the age of 30, but I endured a really bad pregnancy. I suffered from pre-eclampsia which, basically, meant my ankles became swollen and I had problems with my kidneys, which resulted in proteins leaving my body via my urine. It is an extremely dangerous condition for both the mother and her unborn child. There were fears that there could be deadly complications, one of the main concerns being my high blood pressure.

Toxaemia, which indicates toxins in the blood, was also diagnosed. My body was giving up on me and I knew I was really ill. It was really scary. For the first 12 weeks I couldn’t stop vomiting, which meant I couldn’t go to work. I thought, If this is pregnancy, you can keep it!

After a while, though, the vomiting became less frequent and I was able to return to my work at Sanderson’s but, within weeks, my feet had swollen up like balloons. When I was 25 weeks’ pregnant I was getting severe headaches and silver dots began appearing before my eyes. My colleagues were telling me that I didn’t look well and that I should visit my doctor. I made an appointment but found I couldn’t even get my shoes on.

After checking me over, my doctor wouldn’t even let me get off the chair. She tested my urine and discovered that the sample contained three plusses of protein, which put my baby and me firmly in the danger zone, and my blood pressure was through the roof. She immediately telephoned for an ambulance.

I was taken to Hillingdon Hospital and there I remained for weeks and weeks in the maternity ward. It had been decided that I needed bed rest to bring my blood pressure down and I was placed in a room next door to the nurses’ station because I could be more closely observed through a window in the dividing wall.

Despite all the care and attention I had been receiving and weeks of bed rest, at 28 weeks my blood pressure went through the roof again and, because the special-care baby unit did not have a suitable cot and the doctors had decided I might need to have an emergency Caesarean operation, the hunt was on for a hospital that could not only deliver my baby but would have a specialist cot to accommodate him or her after the birth.

When I was informed that the nearest hospital to meet these requirements was in Brighton, I panicked. I didn’t want to go there. After all, there was no way Sean would have been able to get there and I really wanted him to be with me when our baby was born. The doctors and nurses tried to reassure me. If, they told me, my blood pressure could be reduced, I could stay where I was. Nurses came in to help me with relaxation exercises and, thankfully, my blood pressure responded accordingly.

Two weeks later, on 5 January 1990, a nurse came in and told me I would be OK to go on for another day. ‘The longer you keep the baby in there, the better.’ The next thing I knew, I was surrounded by medics telling me they needed to get the baby out straightaway after they had studied the results of some medical tests. I was to have an emergency Caesarean operation. There was just enough time to telephone Sean before I was put under a general anaesthetic.

For the next 48 hours I had to have a nurse by my side. My kidneys were packing up and I was continually being sick owing to an allergic reaction to the anaesthetic. When I came round, Sean was sitting next to me, stroking my hand, but because our son Patrick was so small, he had already been taken to the special-care baby unit.

Normally, under these circumstances, a picture is taken of the newborn baby to show the mother when she wakes up but, unfortunately, the camera was broken so all I knew about Patrick was what Sean had told me. ‘He’s really lovely,’ he said, before explaining that Patrick was receiving special care owing to the fact that he weighed just 2 pounds 10 ounces (about 1.3 kilos). He also had pre-eclampsia and his body, like mine, had been filling with fluid. When it was drained from him, his weight dropped further to 2 pounds 4 ounces (just over a kilo).

It wasn’t until Patrick was four days old that I was taken down to see him for the first time. There were lots of tubes and wires attached to him and, when I first saw him, I broke down and cried because it was so scary seeing him like that. He was such a tiny little thing, lying there with an oxygen box to help him breathe, and feet so small that the only way the nurses had found to keep his socks on was to tape them round his ankles to stop the skin rubbing off, because he was moving his legs around so much. From this point on I saw Patrick every day. Having our own child was exhilarating but scary at the same time, since we had little idea of whether he would survive or not.

I was kept in hospital for ten days after the birth. Bearing in mind all the stress I had been under, I was less than impressed as I walked through our front door. The house looked as though a bomb had hit it. There were piles of washing up and it was obvious Sean had not been coping at all with living alone. I ended up picking things up from the floor and, to be honest, I was fuming.

Each day afterwards I was taken to visit Patrick in the hospital by a voluntary helper since, because I’d had a Caesarean operation, I was not permitted to drive. Sean found fatherhood rather scary. He’s such a big bloke and, of course, Patrick was so, so tiny. In fact we have a photograph of Sean holding Patrick and Sean’s thumb is as big as Patrick’s head.

Patrick’s health gave us and the medics plenty of cause for concern. He wasn’t responding well to treatment or tolerating his feeds and he became very seriously ill. Sean and I were informed that, unless Patrick had a successful blood transfusion, we might lose him. To say we were desperate and scared would probably be an understatement and I found myself praying all the time – the Hail Mary, one of my favourite prayers. Things became so serious that Sean and I agreed we would ask the hospital’s Catholic priest to come to Patrick to baptise him and to administer the Last Rites. Patrick was given two sacraments. The first allowed him to be baptised and this allowed him to receive a further sacrament, the sacrament of the sick.

The decision to ask for the sacrament of the sick was born out of pure desperation. Patrick was, indeed, extremely ill. A successful blood transfusion was his only hope of survival. Thank God for people who so kindly give their blood! Had it not been for people like that, Patrick would not be with us today. Sean and I were overjoyed that he responded so well to the blood transfusion – in fact, he looked like a little tomato afterwards and, a couple of days later, his tolerance to feeds improved, he gained weight and became stronger and stronger.

However, there were still a few scares along the way, not least when workmen outside the hospital accidentally cut through an electricity cable and the emergency generator failed to kick in. As a result there were nurses running around the special-care baby unit, frantically handing out blankets for the babies and operating bellows-like equipment to help some of them breathe. Thankfully, after 20 minutes or so, the power supply was restored.

Patrick didn’t get the all-clear until he was ten weeks old. We were on cloud nine when we were at last told we could bring him home, but we soon discovered life would be far from straightforward. For a start, sleeping was a problem. Having been in the special-care baby unit for the first ten weeks of his life, Patrick had become used to all the beeping noises of the equipment that had helped him to survive. At home, he began to make strange growling noises as he slept and, after a while, it was driving Sean and me round the bend. What was going on?

I telephoned the midwife, who came round to reassure us that Patrick was probably only compensating for the noises he had got used to hearing while lying in his incubator. She suggested we get a clock, wrap it in a towel and lay it next to Patrick as he slept. Thank God it worked!

After Patrick had been home for ten days, Sean’s mother Coral came to stay and to offer support. That day, we put Patrick down for a sleep but, after a while, I became concerned, particularly since he hadn’t woken up as normal for a feed. When I went over to Patrick, my concerns were raised because he looked so very pale. I called Coral in to have a look at him.

Being a nurse, Coral knew instantly something was not right and noticed that Patrick was blue around the mouth. I telephoned our doctor, who suggested I make an appointment to bring him in, but Coral disagreed. ‘We’ve got to get this baby to hospital right now!’ she insisted. As I picked Patrick up he was limp and his head just flopped right back. We rushed outside and I handed him over to Coral, who, by now, was sitting in the back of our car.

I have to say, I drove like a lunatic en route to the hospital, mounting pavements and jumping red traffic lights and, on arrival, I just abandoned the car in the middle of the car park. I grabbed hold of Patrick and ran as fast as I could into the hospital. ‘Someone’s got to look at this baby right now!’ I yelled and, fortunately, right in front of me, a consultant appeared who had tended to Patrick and me while we had been in hospital a few days earlier.

‘Whatever’s the matter?’ he asked. He laid Patrick in his arms with his feet towards his chest and his head in his hands. Then he raised and lowered his arms. ‘Come on, Patrick,’ he said before slowly repeating the movement. By now I was frantic and holding tightly onto Coral’s arm, but the consultant remained calm and raised and lowered his arms once more, at which point Patrick took a huge intake of breath. What a relief!

Patrick was treated for septicaemia and given a lumbar puncture – and it was a worrying 24 hours waiting for the results. He was diagnosed as suffering from apnoea, also known as sleep apnoea, a breathing-related sleep disorder that can cause the sufferer to stop breathing up to 400 times during the night. We were concerned to learn it was a potentially life-threatening condition but glad it had been diagnosed early as, untreated, it can be associated with heart attacks and strokes.

Patrick was kept in hospital for ten days. After such a scare I was afraid to take my eyes off him even for a moment, and I often had to pinch his earlobes to wake him up in order to remind him to breathe again. Thankfully, though, we were told he would eventually outgrow the condition.

Nevertheless, for the first three years of his life, Patrick was a sickly child and had to be given so many injections for his various ailments that he began to look like a junkie. Among the setbacks he encountered were a number of chest infections, glue ear, throat infections, vitamin D deficiency, severe croup, whooping cough and a disorder known as rickets, which causes poor development of the bones. I felt we could have had a permanent room at the hospital, since we seemed to be returning there on such a frequent basis. Sean and I often had to give Patrick nebulisers because it seemed he would pick up any bug that was going around at the time.

Because Sean was now working as a proofreader for Middlesex County Press, much of the day-to-day caring for Patrick was down to me and I would often find myself spending the night at the hospital while Patrick was being treated for one thing or another.

When he was two years old we all moved to nearby Acton because our one-bedroom home was no longer big enough for the three of us. Again, we purchased a shared-ownership home, but this time we had an extra bedroom and a garden. Not only that, the lady living next door was a childminder, which allowed me to return to work and, fortunately, despite my prolonged absences, Sanderson’s had kept my job open for me.

Our neighbour got on really well with Patrick and, after working as his childminder for a while, soon got to know a lot about him. Patrick would play with her little daughter but, one day when I went to collect him, she told me that she had noticed Patrick playing inappropriately with the toys. For instance, rather than running a toy car along the floor like most children would, Patrick would turn it upside down and just spin the wheels with his fingers. Meanwhile he’d learned the alphabet really quickly and even knew it backwards.

One day, while sitting in the doctor’s surgery with Patrick, I noticed other patients listening as he recited a Thomas the Tank Engine story, word perfect, from memory. He was only three years old at the time and he was just staring at the wall with no book in sight. What the other patients didn’t realise was that, by now, Patrick had memorised all 25 of his Thomas the Tank Engine stories – each one word-perfect. Sean and I were convinced we had a little Einstein on our hands!

To our disappointment, our neighbour packed up childminding. We found another lady to take over but, after unexpectedly returning early to pick him up on a couple of occasions, we had not been impressed to discover that she had left Patrick outside the front door – which had been shut each time – and that he had been sick, unnoticed, in his buggy.

I took the decision to check Patrick in to an independent nursery at St Mary’s School in Hillingdon but, although I was convinced this would be the best move for him, he had other ideas. To say he hated the experience would be an understatement. Whenever I left him there in the mornings he would scream and scream and scream. He wouldn’t play with the other children, preferring to sit by himself in a corner of the room. He wasn’t getting on at all well. I was, naturally, worried but I put his behaviour down to the facts that he had been so poorly for so long, and that he had become so used to my being with him almost all of the time.

In 1992, when Patrick was three, I became pregnant again. Once again I was diagnosed with pre-eclampsia, this time after 31 weeks, and was not impressed when I was informed it was rare to suffer it twice unless I now had a different partner! My condition meant I had to stay in hospital for nine weeks.

Because of this, Patrick had to stay with my mum in Middlesbrough. At first he would speak to me on the telephone but, after a while, he refused to do so, probably because he thought I had deserted him.

Because of my history, the doctors wanted to keep a close eye on me but, after being in hospital for four weeks and seeing other mothers come in, having their babies and leaving, I soon became pretty fed up. Eventually, I was allowed to go home at the weekends, but only on the condition I return to sleep at the hospital each night. At least that gave me something to look forward to.

When I got to 40 weeks, the consultant informed me he was about to go on holiday and that he would see me in two weeks’ time on his return. He told me my baby would be delivered by Caesarean section but he would like me to experience labour pains because I would feel ‘cheated as a woman’ if I didn’t.

Only a man could say that!

After returning from his holiday the consultant was informed I had not experienced any labour pains at all. As a result, on 21 January 1993, he took the decision to deliver my baby by Caesarean section straightaway.

I’d had to have an epidural, which was a weird feeling. Sean was supposed to be present at the birth but he chickened out, claiming there wasn’t a gown big enough for him. Instead, he stood outside, looking through one of the windows and giving me the occasional thumbs-up sign for encouragement.

There was no pain at the time of birth, just a tugging feeling as they pulled Angelo out from me. When he was born Angelo had the cord around his neck – and red hair! He also had an infection in one of his eyes, but at least he weighed 6 pounds (2.7 kilos), a much healthier birth weight than Patrick.

At first, Sean and I were pleased to believe everything would be more ‘normal’ with Angelo. After we brought him home, Patrick returned from my Mum’s. He went to run towards me to give me a hug but then saw Angelo in the Moses basket and refused to come either to me or anywhere near his newborn brother. He also declined to go anywhere near Sean. I suppose, in Patrick’s eyes, we’d replaced him with a new baby. However, I’m a very cuddly, kissy person and, over the next few days, I was able to reassure Patrick that we still loved him just as much as we ever had.

After a few months Coral and Sean’s Aunt Pam came with me and the boys to spend a brief holiday in a Pontin’s holiday camp in Jersey. Sean didn’t come. He absolutely hates holidays, but at least it was a much-needed break – particularly as far as Patrick was concerned because it meant he didn’t have to be dragged screaming into the nursery for a while.

Everything seemed to be going well during the holiday and I was pleased to note that Angelo was passing all the milestones any parent would expect from their child as he or she grows up. In fact, we have many photographs taken during this holiday showing Angelo smiling and looking at the camera with loads of eye contact. As far as I was concerned, Angelo was a particularly good little baby who was happy just as long as he was fed and kept comfortable.

When Angelo was 18 months old I took him to have his measles, mumps and rubella (MMR) injection. From this point on, his health would become a major concern to us. During his belated christening, history seemed to be repeating itself when he stopped breathing, as we stood by the altar in the church. Then, suddenly, there was a huge gasp as he got his breath back. I suspected he too was suffering from sleep apnoea.

Later, Angelo came down with a severe ear infection and a very high temperature – so high that we took him to the hospital to be checked out. The infection had become so acute that his ear had filled with green pus. He was given antibiotics but he was allergic to them. As a result his neck began to swell and he developed blotches all over his body. A different antibiotic was administered to correct the problem but he was allergic to that one too and became really ill.

Eventually, the infection subsided but Angelo was now noticeably beginning to act strangely. For a start, he didn’t want me to touch him and he would stare, fixated, at the patterns on our wallpaper. He would frequently line up a variety of objects in perfectly straight lines across the room and, if you moved any of them even slightly, he would go completely berserk.

He developed a high-pitched scream and boundless energy, and would repeatedly run from one corner of a room to the other – sometimes for hours on end – or he would bash himself against the walls. Other times he would walk around on tiptoes or just stand in a corner for really long periods of time. Worst of all, he wouldn’t let me cuddle him, which I found just heartbreaking. Although Angelo seemed to be a happier child than Patrick, his communication skills were extremely limited, usually no more than one-word demands.

Patrick’s communication skills were difficult nonetheless. In his mind, he had to be in control of a conversation and would be most upset if it didn’t go completely his way. We soon realised he had very little desire to listen to anybody else’s point of view.

His screaming fits each time he was taken to the nursery added to the stress Sean and I were experiencing. In all, Patrick was at the nursery for three years and there wasn’t a single day when he didn’t protest on the way. One day, he even released himself from his car seat and grabbed the steering wheel in an effort to prevent me from taking him there. Distracted, I turned to tell him to get back into his seat, which resulted in my driving into the rear of the car ahead of us. I ended up with whiplash but, fortunately, both Patrick and Angelo were unharmed.

It wasn’t the last time such an incident would occur. Later, on the way to the school, I was distracted by Angelo playing up in the back seat. It was only a momentary lapse in concentration but it was enough to cause our car to collide with the car in front of us. Our car was very badly damaged but, fortunately, no one was injured and the driver of the other car was very understanding as we exchanged our details.

Nevertheless, I was in quite a state. Once I got home I was nauseous and headachy and just could not stop crying, especially since Sean seemed to be so cross with me. As was, and is often the case, I was relieved that a two-hour keep-fit session that night made me feel a lot better and washed away some of the stress I’d been under.

By the time Patrick was five he had moved on to St Mary’s School from the nursery but his behaviour was still giving cause for concern. He would constantly talk to himself and failed to understand even the most basic of instructions. He adopted a solitary manner of play, being particularly wary of large groups of children, and this became most apparent when he developed an obsession with jigsaws.

He hated it if I left him, whether at home or at the nursery, and, even if I was going to the toilet, he would want to come with me. Patrick didn’t want me to go to work and, at night, he would get out of bed to check I was still in the house.

I had assumed that his behaviour had been down to all the problems associated with when he was a special-care baby, but we were eventually advised to take him to Hillingdon Hospital to meet with the consultant paediatrician who, unbeknown to us at the time, had already diagnosed him with Asperger Syndrome. The paediatrician then advised us to go as a family to see a psychotherapist, Mrs Porter, at the Child, Family and Adolescent Consultation Service, where children can get access to one-to-one or group therapy. We assumed this was because of Patrick’s screaming sessions at school, but this was not the case: the wheels had been set in motion regarding Patrick’s diagnosis of Asperger Syndrome. It’s just that no one at the hospital had seen fit to tell us!

Mrs Porter noted that Patrick would benefit from individual psychotherapy and, as a result, we returned to see her on a weekly basis. Patrick made good use of these sessions, gradually becoming more talkative and expressing his ideas on paper, either through drawing or writing. He still reacted poorly when subjected to change or stress, but Mrs Porter reckoned he was responding well to clear limits placed before him.

In fact, Patrick’s self-esteem benefited from these sessions. He felt more grown up when he was alone with Mrs Porter, although at times he was unsure who should be in charge of the sessions – an adult or himself. As time passed, she changed the sessions by moving into another room, a change that affected Patrick’s progress quite significantly, as his play immediately regressed to become repetitive and stereotyped.

Mrs Porter pointed out that Patrick would continue to require psychotherapy in life to ensure he would be aware of clear and safe boundaries in all situations to enable him to function successfully. The psychotherapy sessions were clearly helpful to him but, one day, when Angelo was two-and-a-half years old, Mrs Porter said, ‘I think you need to have Angelo diagnosed by the consultant paediatrician.’

‘What do you mean?’

‘I think he may possibly have autism.’

I gripped the sides of my chair. What a horrible-sounding word. ‘What’s that?’ I asked. The only thing I vaguely thought I knew about the condition was what I had seen in the 1988 movie Rain Main, starring Dustin Hoffman. I noticed the shock on Sean’s face and watched as his shoulders dropped. It was as if a hundred-pound weight had been placed on each of them. As for me, when the penny dropped, it was as if the world had exploded, but there was no noise.

On the way home, all I could think was, Oh, no, more barriers and hurdles to overcome. Autistic tendencies? What’s that? Why us?

Nor was I looking forward to breaking the news to our family. Of course, we knew the boys were no different from the way they were before this bombshell, but we realised, given this knowledge, that our expectations for them would undoubtedly change.

We were not given any information other than that there may be a support group in our borough but, even then, no one at the Child, Family and Adolescent Consultation Service seemed too sure. Autism was hardly explained to us at all and we left after being told we would have another appointment in six months’ time. I tried to find out about our local autism support group and was dismayed to discover it had folded because the lady running it could no longer find the time to continue.

After receiving such devastating and life-changing news, we were totally on our own, it seemed, to deal with our problems. After we had attended a specialist centre, Harper House in Radlett, and the Child Development Centre in Hillingdon, it was finally confirmed: Angelo was, indeed, autistic and the next few days in particular saw Sean and me trying our best to come to terms with the situation.

It really hit me when I rang my mother. I just cried and cried, but I knew it wasn’t going to help anyone. With me crying and Sean burying his head in the sand, it seemed the kids were just going to carry on doing what they were doing. Of course, Coral and Mum were very supportive, but with them in Middlesbrough and us miles away in London, they could offer only emotional support and I felt very alone.

Thank God then for ‘Aunty’ Zita, who used to work with me at Sanderson’s, the loveliest woman anyone could ever meet. She really stepped up to the plate and was a wonderful support to us all. She’s a small lady whom I used to pass on the way to work and had ended up giving lifts to. Zita has no family of her own and I guess I became the daughter she never had.

Meanwhile, Angelo seemed to be in a world of his own. I really wished I could get inside his head, just to have some idea of what he was thinking. I remember mentioning this to our GP when I told him about Angelo’s diagnosis but I’m sure he felt I was just being a fussy mother, particularly when he said, ‘Oh, what do you think about that, then? I reckon you must feel your son’s an alien, don’t you? Every time your boys come here, they never sit still and they’re always touching my things.’ Needless to say, I didn’t go back to him any more.

Five days after diagnosis, on Valentine’s Day, we took Angelo to Hillingdon Hospital for a blood test to eliminate the fragile X syndrome, which is a chromosome deficiency. After we had waited for an hour and a half, a nurse attempted to take blood from Angelo, who, by now, had become quite hysterical. The nurse called two of her colleagues to assist her while I held onto Angelo, but even then it took five attempts before they eventually succeeded in getting the required blood sample. At least the blood test revealed that Angelo did not have the syndrome after all.

Later in the day, I visited Grangewood School in Eastcote, which had been recommended to us. This specialist school had a facility for autistic children but, in spite of that, after viewing the school I didn’t think it would be an appropriate place for Angelo. Sean and I were convinced he would be better off going to a mainstream school with one-to-one tutoring. We felt he would have the added stimulus of other ‘normal’ children, which would help him integrate and progress more satisfactorily. I know this sounds cruel, but I did not want Angelo to go to a special school for children with learning difficulties and physical disabilities – I just couldn’t help the way I felt at the time.

The following day a health visitor called round to see us but, surprisingly, she didn’t have any information on autism for us. Instead she gave us an information sheet with names and addresses of help groups and voluntary societies. She remarked at how amazing Sean and I were, in that our marriage had not suffered in spite of all the problems we had already faced over the previous six years with Patrick. She told us she knew problems of such magnitude often split couples up and I remember desperately hoping that our marriage would be strong enough to withstand all the extra pressure it now faced.

After another depressing meeting with Mrs Porter, we learned that Angelo would need lots of help – at least two years of intense psychotherapy – and she stressed the need for us to prevent him from performing all his habitual rituals. By now, I was not feeling too good. I was beginning to feel like a wind-up toy, my brain filled to saturation point, but at least Sean and I had a nice romantic evening at a local pub that night, which made me feel a little better.

A couple of days later, though, the cracks began to appear between Sean and me, when he just stopped talking to me, even though the rest of the family were being supportive. I’d been finding it difficult to concentrate at work but the silence from Sean was even harder to deal with, because he was bottling up his emotions. To my mind, he was in denial, but I really wished we could talk it out between us, that we could work together, not only for our sakes but for Angelo’s.

As a child, I would keep diaries but, after a while, I had stopped doing so. Now I just felt the urge to write my feelings down on paper once again. I began writing each day. I guess it was my way of sharing my problems with someone – even if it was just myself.

Fortunately, within a few days, the tension between Sean and me subsided and, after I’d made it clear to him that we would have to work together if he wanted to see an improvement in Angelo, he made more of an effort. Meanwhile, I’d spoken to Ingrid, a trainee social worker from Network 81, a support group of parents of children with special educational needs. She was very helpful and assisted me through the process of obtaining disability allowance.

After a couple more days Sean was in a much better mood, which was surprising, especially since Angelo had had a very disturbed night, not having slept until around 4 a.m. I was absolutely shattered. Unfortunately, the following night he wouldn’t settle again. I found myself getting increasingly tired and cross with him, even though I knew I shouldn’t. Sean eventually snapped, ‘Shut up!’ at Angelo and went up to bed, unable to cope with his laughing loudly and constant running around the room. Angelo eventually went to sleep at 2 a.m. – a sleep pattern that would become all too familiar to us in the years to come.

The less Angelo would sleep, the more hyper he would become. With his seemingly boundless energy and night waking, it was rare to get any decent sleep and often I found myself sleeping on the sofa downstairs. I even took to doing my housework in the early hours, reckoning I may just as well be doing something useful if I was awake anyway. Sean and I were becoming exhausted. Both Angelo’s and Patrick’s disturbed sleeping patterns were having a detrimental effect on us and the resultant levels of stress often made us irritable with each other – even to the point that I wondered whether our relationship could survive.

Jocelyn Phillips worked for Portage – a service that supports parents with strategies in the home – and she turned out to be a great support to our family in the months to come. However, she disagreed with my views on not having Angelo attend Grangewood School and considered that his going to a mainstream school would not do him justice. Jocelyn felt that Angelo needed a specialised way of teaching and that Grangewood School was particularly appropriate to his needs. What a dilemma!

When Angelo’s diagnosis was confirmed, an appointment was made at the Central Middlesex Hospital for a brain scan and, it goes without saying, there was little chance Angelo would be too happy about it. When a nurse attempted to put glue on the side of his temples in order to attach at least 20 wires, Angelo became very distressed and refused to co-operate – even when I held down his hands and someone else held down his legs he was too strong. It broke my heart to see him so distressed.

In the end it was decided to return to the hospital another time and to complete the scan under sedation in the children’s ward. I was asked if Angelo had been tested for epilepsy, since it was believed up to 50 per cent of autistic children either have or can develop it.

All this uncertainty, the lack of sleep, the worry and strain that we found ourselves subjected to meant that every day resulted in a roller coaster of emotions for Sean and me. It all boiled over a few weeks after Angelo’s diagnosis and resulted in a major argument between us during which I even threatened to leave home.

Don’t let anyone tell you that living with autism is easy. It is testament to our relationship that it has survived so strongly over the past few years in spite of all the heartache and challenges we’ve had to face along the way.