Authors: Anna Kennedy
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.
‘That’s it, we’re turning back!’ he said, to which Patrick went bananas and threatened to get out of the car.
‘If you want to get out of the car and take your chances on the A40, Patrick, well, that’s up to you!’
This journey was fast becoming a nightmare. Then I had an idea. I knew that, just a mile further along the A40, we’d pass the Polish War Memorial at RAF Northolt, where Diana’s body had been flown in from Paris just a few days earlier. I decided to pretend that’s where all her tributes needed to be taken and Patrick was taken in by my ruse.
On our arrival at the memorial, Patrick laid down his flowers and his picture of Buzz Lightyear among the poppies already
there. Then he returned to the car, satisfied he’d done his bit for Diana’s memory.
In February 1998, the London Borough of Hillingdon declined to finance an assessment for Patrick, which served only to further hinder his prospects of acquiring a school place. How many more barriers would we have to face? Sean and I felt we had exhausted every avenue in trying to get a decent education for our boys – and desperate times call for desperate measures. We decided to write to our local MP, John Randall, and he subsequently visited our home to discuss the situation.
We told John how we felt the local education authority (LEA) was in breach of its duty to arrange the
special-education
provision for Angelo. This had been set out in his statement of special educational needs with a recommendation that he attend a day school that catered for autistic children ‘at the moderate/higher end of the spectrum; a small school with small class groups where staff are specially qualified and trained in meeting the needs of autistic children, thereby ensuring access to specific teaching strategies so Angelo can maximise his intellectual ability; a school that can foster feelings of security in an autistic child; a school that can offer speech therapy sessions and where speech therapists and class teachers liaise closely’.
John spent the best part of the day at our home, watching Patrick and Angelo, and he listened sympathetically to our plight. We were grateful when he offered his support and he agreed to write letters and make representations to appropriate government ministers on our behalf in an effort to speed things
up. One of his letters was replied to by the acting group director of the London Borough of Hillingdon, who stated that, despite our assertions the borough was in breach of its duty, finding a day school to cater for children at the moderate/higher end of the spectrum had proved to be extremely difficult.
The letter went on to explain that the LEA (Local Education Authority) had made every effort to secure a place for Angelo at an appropriate school within daily travelling distance of Hillingdon. Six schools had been approached but none had places available. Because the specialist teacher at St Mary’s School in Hillingdon had resigned, there would be no replacement in situ before Angelo was due to begin full-time education.
It mentioned that other schools were already oversubscribed and had their own waiting lists. The LEA had done its best but the London Borough of Hillingdon did not have adequate day provision at that moment in time, although the LEA had placed several children from the borough in out-of-borough schools, including the Boston Higashi School, at considerable cost to the council.
The letter recognised that Patrick’s diagnosis of Asperger Syndrome had been drawn to our attention three years late and that the LEA had sought an explanation from the health authority for this delay. It had also requested a referral to a speech-
and-language
therapist to address Patrick’s communication skills.
We were pleased to read this admission. It proved to us that the failure to notify us of Patrick’s condition when it was first diagnosed had, indeed, meant that the education plans drawn up for him had failed to meet his individual needs.
On receipt of this letter we wrote again to our MP to inform him of this development and that the situation surrounding Patrick’s latest assessment, which had been put off so often, was now bordering on the farcical.
We pointed out that the common themes running through Patrick’s and Angelo’s experiences were poor communication between the service providers; a lack of specialist provision for children with autistic-spectrum disorders in the borough; and that Angelo’s therapist at St Mary’s was experiencing very severe difficulty in receiving any remuneration from the borough.
At this point, the stress of battling the system had really getting to us both. The frustrations that saw us facing what seemed at times to be insurmountable odds had been coupled with our desire for legal action against the doctor who had not informed us of Patrick’s Asperger Syndrome when it was first diagnosed. Had we known three years earlier that Patrick had this condition, we would have had a much better chance of receiving the appropriate support for him at the time, and the daily routine of dragging him to St Mary’s might well have been avoided.
We felt somebody needed to make a stand in an effort to ensure as far as is possible that such a diabolical situation should not be possible again. We didn’t want other parents to go through a similar experience, being told their child had Asperger Syndrome at a school review. It should never have happened like that. We decided to consult a solicitor to ask for legal aid to take the matter further. However, as the months dragged on, we had become so bogged down in a time-sapping
legal process that we were unable to concentrate fully on matters more immediate and, very reluctantly, we decided not to pursue the litigation any further.