Not Stupid
Page 7
The situation became practically unbearable and led me to ask a doctor for help. Two types of preparation syrup were prescribed on a short-term basis in an effort to calm things down, but they made them even worse, one causing Angelo to be completely hyperactive, the other turning him into a zombie-like state that made him very pale and lethargic with no sparkle in his eyes at all. He became very heavy-eyed and sleepy but, desperate for sleep as we were, there was no way we felt we could continue to administer the medication to him because of the adverse effects it was having on him.
At this time Angelo was also attending weekly sessions at the Child, Family and Adolescent Consultation Service, which he particularly seemed to enjoy but which, sadly, folded owing to a lack of resources.
At home, Angelo was constantly demanding my attention. However, I was encouraged by an improvement in his eye contact with me and by his allowing me more physical contact with him. One vignette from a psychotherapist’s report emphasised this improvement: ‘Angelo fell hard. I felt he must have hurt himself. He stood, seemed shocked. Mum went to comfort him. He went rigid. She could not hug him or comfort him. He was so resistant. He continued as if nothing had happened.’
Later she wrote, ‘Angelo banged his knee. He stopped. He cried, ran to Mum who hugged him. They looked at his knee together.’
Problems aplenty remained, though. Angelo was fiercely resistant to being washed or bathed, and would become very easily distressed whenever his surroundings were unfamiliar.
At an interim review of Angelo’s progress at St Mary’s School I would have settled for two days’ teaching with three days’ home tuition, while Sean tried to convince the governors that home provision would, in fact, be cheaper for the borough than sending Angelo to a residential school. Nevertheless, we failed to persuade the governors to accept him at St Mary’s because they felt the school would be ‘unable to provide for his needs in the highly structured environment of full-time education and within the limited space available’.
Meanwhile, I was still struggling to get Patrick to go to school. One day, six months after his diagnosis with Asperger Syndrome, things came to a head. On arrival at the school, I really had to struggle to get Patrick out of the car. When I finally succeeded he put his hands and head against the brick wall outside the school and just sobbed and sobbed and sobbed.
‘Please don’t take me in that place any more! I don’t like it! Please!’
Another mother taking her child to school was passing by. As I had Angelo in the buggy I asked her if she would ask Mrs Docherty, the head teacher, to come outside to see me. To be honest, I was at my wits’ end.
Mrs Docherty came out and saw Patrick sobbing his heart out. ‘This can’t go on,’ she said. ‘What are we doing to this child? We’re just damaging him.’ She offered to write a letter to recommend Patrick no longer attend St Mary’s and that he should be offered home tuition instead.
With this in mind, Sean and I decided to convert our garage into a classroom for Patrick, but getting home tuition didn’t happen overnight. Eventually, however, a lovely lady called Vanessa arrived to give Patrick five hours of education a week – two and a half hours one day and two and a half hours another – but all that rather depended on whether Patrick wanted it.
Patrick would find it very difficult to distinguish what was real and what was not. He’d try to fit us into a world he’d seen portrayed in videos. While he had an obsession with Thomas the Tank Engine and anything to do with dinosaurs, he had at the same time an intense dislike of human beings. He thought people were rubbish and this was reflected in the angry pictures he would draw. He hated it if people came to our house. To him, they were intruders and he would shut himself away upstairs in his bedroom if anyone arrived. ‘They’re intruding. They’re not showing respect,’ he’d insist. As for me, I hadn’t been showing him respect because I had taken him to school each day.
For some reason, Gordon the Engine in his Thomas the Tank Engine book had ‘angry wheels’. Could it be the thought of steam coming from the wheels? If he saw models of the engines in the shops, he’d want them. If I told him I would buy him one it was never good enough, he wanted all of them and this, invariably, led to tantrums.
Patrick knew The Gingerbread Man and The Three Little Pigs videos word-perfect and would constantly ask the same questions over and over again to ensure he received the same answer each time. He would read dictionaries and ask the meanings of words he’d read so he could see that what he’d read was correct. He needed constant reassurance. He was a very anxious little boy.
His obsession with dinosaurs began after he watched the 1993 movie Jurassic Park. We’ve since been to visit the Natural History Museum in London dozens of times to satisfy his appetite for anything dinosaur-related. Nothing else there interests him. He can look at any bone on display and tell you what Cretaceous or Jurassic period it comes from.
I remember one particular incident when he was seven years old. It was the occasion of his Holy Communion at Our Lady of Lourdes church. Patrick was looking very smart and we tried to prepare him for what would happen. However, when he heard that the priest, Father Collin, would say ‘Body of Christ’ before giving him the host, Patrick became very anxious. At that time, we had no idea that many children with Asperger Syndrome can take anything said quite literally.
When it was time for Patrick to go to Father Collin, he pursed his lips and said that he didn’t want the host because he would be swallowing Jesus Christ. After much explanation at the altar that it would be like eating a piece of bread, he finally agreed to take the host. ‘Is there any butter on it?’ he asked loudly. We were very fortunate that Father Collin is a patient man.
Mary Milne was head of client services on Hillingdon Borough Council. She was also in charge of the statementing process and I had already given her a pretty hard time over Patrick’s and Angelo’s statements – first, because there had been so many woolly comments in them and, second, because they were not applicable to children with autism.
A statement is a passport to get the right sort of support and education for a child and the financial package. If the statement is not right, you are not going to get the correct support, so it is crucial that the statement be absolutely relevant to that particular child. Children with autism require speech-and-language therapists, not because they can’t speak properly, but because they have a communication impairment. They need to learn how to interact socially but, while looking at the statementing process, Sean soon realised that the council tended to write particularly woolly statements.
The statements would highlight the need for regular speech-and-language therapy, but what does regular mean? I have a regular Christmas dinner – i.e. once each year – but therapy should be held on a much more frequent basis. Parents who don’t know this may think regular means frequent and often, but, if it doesn’t, it’s no use to anyone, especially if the child has a communication problem. With that in mind, Sean and I took a lot of time and effort to ensure the statements for Angelo and Patrick were exactly as they should be.
We already felt let down by the powers that be. Angelo was due to have been assessed for speech-and-language therapy in the nursery because it was felt the statement had not been meeting his needs, but this had not been undertaken because of a lack of funds from the London Borough of Hillingdon, the consequence of a £20,000 overspend. Two hours’ autistic support for Angelo was, obviously, nowhere near enough and we were determined not to lie down and allow this situation to continue.
We were desperately looking for schools that would accept Patrick and Angelo. Our desire to find somewhere suitable saw me making dozens of telephone calls and, in all, I visited 26 schools within an hour’s drive of our home after being told by the statementing officer of the London Borough of Hillingdon that the ball was in my court, that it was up to me to find a school because my son Angelo was ‘unique’, although we now know there are a vast number of children just like him in the area.
At first I looked for schools for children with autism, but the ones I visited were for children at the more severe end of the autistic spectrum, and some were like institutions. The scale of the challenge was brought home to me when I realised that one of the schools had just five places for the 55 applicants and several others were also full to bursting.
I was becoming increasingly worried. Having discovered the importance of an early start in education for autistic children, I was looking for a place that seemed more like a mainstream school that had been adapted in some way to meet the needs of my boys. To me it was obvious that there was no way Angelo would have been able to cope with around 30 or 40 other kids in a classroom.
I have since discovered that many teachers in mainstream schools have found it very difficult to cope with children with such specific needs when they also have 30 or more other children to teach at the same time, and that many parents of autistic children have been forced to send their offspring miles away from home to obtain a decent education, most notably to the specialist Boston Higashi School in America. This was even suggested to us by an educational psychologist but, after consideration, Sean and I decided against sending Angelo to a residential school and decided to press ahead with our search for a specialist school in the UK.
One establishment, however, did impress me: Springhallow School in Ealing. I really liked it there and thought it would be perfect for Angelo, since its classes were limited to eight children with one teacher and two assistants. Furthermore, the school had adopted the TEACCH (Treatment and Education of Autistic and related Communication-handicapped CHildren) methods and followed the National Curriculum at levels appropriate to each child’s own development.
In a nutshell (although we’ll come back to it in Chapter Six), TEACCH places an emphasis, among other things, on structured teaching, regular assessments leading to individual programmes and tuition, self-enhancement, cognitive and behaviour therapy and generalist training. There were individual programmes in speech and drama; an emphasis on social skills; integration with children from other schools; a variation in meals; and a warm, caring and happy environment.
The more I discovered about the school, the more it seemed just what we wanted for Angelo and Patrick. There were close links between home and school and a weekly home/school book was kept so parents had regular weekly contact. The school placed great emphasis on oral and written language developments. Each child was carefully observed and assessed on entry so that a suitable programme could be devised to cater for the needs of children, which would have been a huge benefit, particularly to a child like Angelo.
It seemed too good to be true and, unfortunately, it was. After further investigation, we discovered the school accepted only children from the London Borough of Ealing and they were already bursting at the seams and teaching in the corridors – such was the demand for specialised places.
Faced with the prospect of not being able to secure a school place for Angelo in the foreseeable future, we managed to obtain five hours of one-to-one tuition each week for him at home. His tutor was a very nice lady but she admitted to us that she didn’t have a clue what autism was. Then, one day, she just sat on the floor and told me, ‘I’m sorry, but I just don’t know what to do with your son.’ The poor woman just hadn’t been given the appropriate training to work with autistic children.
Sean and I became like ships in the night. He was working in the IT department at Thames Water and was getting home from work at 6 p.m., which was just as I was going out to work myself at Health Call or to teach dance in a health club. Usually, when I got home at around 10.30 to 11 p.m., Angelo was awake. Eventually, he would go to sleep but for only a couple of hours, and then he would be awake for the rest of the night. The first thing I wanted to do when I got home from work was go to sleep, but that was impossible. Then Angelo would usually get up around 2 a.m. and that would be it. We had many nights like that and even a couple when he didn’t sleep at all – they were real killers. This was no life for anyone.
All the books I had read on autism stressed the importance of early intervention. Well, I thought, where the hell is it? I certainly can’t find it. I couldn’t even find a suitable school for my own sons. For the next three years, the home tuition for Patrick and Angelo continued – ten hours a week for Patrick and, after a battle, we managed to get extra hours to bring Angelo up to five hours a week.
I remained disappointed not to have been able to get the boys into Springhallow School, but it just wasn’t to be. Since there was obviously nothing else in the borough, another mother, Anne, and I set up a support group soon after Patrick had been diagnosed with Asperger Syndrome.
I’d first met Anne in May 1997, when Patrick was attending St Mary’s School. I’d watched as her child had a tantrum in the playground. Hmm, I’d thought – I recognise that behaviour! Her boy looked around three years younger than Patrick, while Anne looked at the end of her tether. I went up to her to say hello.
‘I don’t mean to be rude,’ I said, ‘but have you got a few problems with your son? Does he have special needs?’
‘How did you know?’
I told Anne I recognised the behaviour, since I’d seen similar from my own son. It turned out her son had been diagnosed with semantic-pragmatic disorder, which, as we saw in Chapter Two, is on the autistic spectrum.
Meeting Anne helped me to share the burden I was carrying and I like to think it helped her too. Between us we started a charitable support group which we called HACS – Hillingdon Autistic Care and Support. At first, HACS was formed with just a few local parents but, after a short while, it rapidly expanded – and all the parents involved were united in their disgust at the lack of knowledge of the so-called professionals on the subject of autism.
By now, I’d often taken Patrick along to Christina Bertolucci’s Saturday club play scheme for children. It had taken him a while to settle there, as the sessions went on for four hours, but eventually he got used to it. After Angelo began to attend the sessions as well, I got to meet other parents, some of whom went on to become trustees of HACS.
Our charity started off on quite a small basis. Anne discovered we could use Our Lady of Lourdes Church Hall in Hillingdon free of charge. We met there one evening a month but, unfortunately, the main evening most suited to the majority of people coincided with my dance class, so it was always a bit of a rush to get to the meetings on time.
It was worth it, though. The meetings were usually quite productive and we all shared our experiences. Sean would come along, too, but he wasn’t really into sharing experiences. He was more into the formal proceedings and he became the chair of the charity, while I took the role of vice chair.
Membership of HACS rapidly increased and we liaised closely with professionals involved with the provision of services for people with autism, and local and national organisations such as the National Autistic Society. We became a point of referral for families of those recently diagnosed as having an autistic-spectrum disorder and provided them with information, advice and counselling, and became involved in an intensive research programme relating to the different approaches available to working with people with autism.
Despite our activities in trying to run HACS and our continuing search for schools willing to accept our boys, the day-to-day problems and anxieties continued unabated. These were particularly apparent with Patrick in 1997 following the death of Princess Diana in a car crash in Paris. Patrick has an obsession with death. By the time this book is published he will be 18 years old and he’s worried because he doesn’t want to feel older because, as he says, he still feels young inside. I’ve tried time and again to reassure him that that’s how most people feel, but he just doesn’t understand, even now.
Back then, though, it was even
worse. The issue of death played a major part in Patrick’s thinking and he was so distressed when he saw Diana’s coffin being carried at her funeral service on television. I know that several children in mainstream schools may have had similar issues but, in Patrick’s case, this was far more extreme.
The questions were endless. ‘How does it feel to die? How do I know there’s a heaven? How do they know Diana’s really dead? How do they know she hasn’t opened her eyes in there?’ Then his anxieties turned to anger against God. ‘God is cruel. Why did he take the princes’ mummy away from them? If God was good it wouldn’t have happened.’
No matter how hard I tried to explain things to him, Patrick just became angrier and angrier. Then, when he saw so many people laying down floral tributes in London, he decided he wanted to do the same. He asked me to buy some flowers and drew a picture of one of his favourite characters at the time, Buzz Lightyear, from the 1995 Toy Story movie. Underneath, Patrick wrote, ‘To Diana, to infinity and beyond.’
I tried to persuade him we didn’t need to go into the city centre to lay down flowers. I was aware that, following Diana’s death, the streets would be choked with traffic and I really didn’t fancy struggling through it all. But Patrick was adamant and, after much screaming and shouting, we relented and agreed to take him. We got into the car and proceeded eastbound along the A40 towards the city centre. It was like a car park, with the traffic barely moving at all. We began to think we’d never get there. Meanwhile, in the back of the car, Angelo’s fidgeting increased and he began screaming. The delays on the road had hardly made my mood any lighter and it was obvious that Sean was getting tenser and tenser by the minute. Then he cracked.