Not Stupid (8 page)

Meanwhile, a report from a psychologist regarding the extreme pressure our family life was under was sent to a chartered educational psychologist, Albert Reid. Mr Reid carried out a full psychological assessment of Angelo and made great strides forward with him, managing to get a few things out of him that, up to that point, no one else had achieved. Most pleasing was Mr Reid’s accomplishment in getting full eye contact with Angelo and gaining his trust to such a degree that Angelo even sidled right up to him, something I never thought we’d ever see, bearing in mind that Angelo didn’t know him at all.

For me, that was a really big thing. Mr Reid even managed to persuade Angelo to cooperate and focus on a couple of tests, which was marvellous. He’d found a pocket of hitherto undiscovered ability and, because of this, I was filled with renewed hope.

In summary, he concluded that Angelo would require placement in a school specialising in meeting the needs of children on the autistic continuum with specialised teachers on a teacher–pupil ratio of 1:6 with additional classroom support. A highly structured and consistent programme such as TEACCH would be beneficial, as would direct intervention from a speech-and-language therapist.

It seemed that all the experts were agreeing what was necessary for Angelo to develop but, unfortunately, neither the finances nor the facilities were in place in the borough to meet those needs.

Meanwhile, Angelo continued to be assessed. In May 1998, a contribution to a statutory assessment from the London Borough of Hillingdon recognised that provision should be made to address his narrowness of interest and rigidity of thinking, ‘as these are interfering with his ability to learn’. He should be encouraged to cooperate in activities that are not of his choosing and efforts should be made to develop his listening and concentration skills, his language and communication skills, his play skills, social-interaction skills – particularly in relation to his peer group – and his self-awareness and independence skills.

Sean and I became aware of the possibility that Angelo might obtain a place at Meath School in Ottershaw, Surrey. We felt it would be ideal for both Patrick and Angelo, but the school held its own assessments and needed to receive paperwork and the agreement of our LEA to pay for the assessment. Because Patrick and Angelo were both still undergoing reassessment at the time, nothing came of it. We had been very hopeful of success but this too proved to be a non-starter.

When a similar request to place Angelo at Radlett Lodge in Hertfordshire was also turned down and we were informed that Hillingdon Borough Council was not in a position to increase the hours of home provision, we seemed to have come to the end of the road in our quest for a decent education for our boys.

D
espite all the heartaches and setbacks we just knew we had to do something. Apart from us, all the other parents at HACS had their children in a school. One of them, Alex Honeysett, also had a son, Sean, who had Asperger Syndrome.

Sean had been in a mainstream school from the age of eight to 14. His parents knew there was something wrong but when they took him to see doctors he was twice misdiagnosed – the first time a psychologist said it was just adolescence and, a few years later, Alex and his wife Sally were told their son had a personality disorder.

It was only through a care worker that Alex heard about Asperger Syndrome. When Alex and Sally finally got Sean an appointment with a specialist, she said, ‘I don’t know what’s been going on here – your son’s life has been wasted.’ With an earlier diagnosis, Sean could have lived a more normal life because he has the intelligence to cope with work. As it was, he
was placed in psychiatric hospitals after receiving inappropriate medication.

Alex heard that our children didn’t have a school to go to and we quickly became friends. At one of our meetings, and in the light of our difficulties in acquiring suitable placements for Angelo and Patrick, desperation was beginning to set in. ‘Let’s set up our own school for autistic children!’ I suggested. My idea prompted laughter from some of the other parents in the group. They insisted I was trying to run before I could walk but, fortunately, Sean and Alex supported me.

‘We have to try something,’ Sean said, readily admitting that he agreed that the foundation of our own school as a centre of excellence for people on the autistic spectrum would, indeed, be a great idea, and Alex quickly backed us up – in fact, over the coming months, he, as much as anyone, was very influential in generating the idea.

Someone else told us it was an impossible dream, adding that we wouldn’t be able to do it without support. ‘We’ll find it somehow,’ Sean insisted. Little did we realise that, from that point on, our lives would never be the same again.

Having our kids at home was not good for them or for us. We were determined our boys would go to a special school that, as far as possible, would emulate a mainstream school, but it would also be vitally important to limit the number of pupils in each class. Not only that, but, if we were to succeed, any school we may eventually establish would have to become a centre of excellence for the care and support of those with autism. Why settle for anything less?

Soon afterwards Alex, Sean and I heard about a residential
home for the elderly, Mountbatten House in Northwood Hills, which had stood empty for some time. One Sunday, Sean and Alex decided to take a look. The building was surrounded by a rickety old fence but Mountbatten House itself appeared very attractive from the outside.

Sean, all 23 stone of him, climbed over the fence and jumped down the other side to take a closer look, but in the process snagged his trousers on a nail to reveal far more of his rear end than was decent. It must have looked extremely suspect to have this big guy wandering around a deserted old council building while at the same time trying to cover up his backside. Sean took a look through the windows. There were lots of different rooms.

After he reported back, we approached Hillingdon Borough Council and asked if we could have a proper look inside, which, shortly afterwards, we did. The property was quite run down inside with a strong, lingering and disgusting smell emanating from the carpets, which had, presumably, been saturated with urine. That said, there were some nice grounds outside, which we felt could be transformed into a nice play area.

We decided to ask Hillingdon Borough Council if it would be possible for us to lease the building for use as a specialist school but were told we would need to make representations at a forthcoming council meeting, since we would face competition from a housing association who also had ideas for the property. Nevertheless, we went ahead with making our intentions clear at the council meeting in the hope of acquiring a base for our project.

However, after further discussions among ourselves, we soon
realised Mountbatten House didn’t have a room large enough for use as a hall and would have required far too much work for our purposes. With so many small rooms and bathrooms, it would have cost far too much to refurbish the whole building. Looking back, I think it was probably desperation on our part at the time to find any property we could use, even if it had been only a stepping stone while we searched for more suitable premises.

Shortly afterwards, Alex heard about a disused special needs school situated very near to our home in Hillingdon. Moorcroft School, a former special school for children with physical disabilities run by the local authority, had stood empty for around 18 months and had fallen into a state of disrepair. When Alex told me about it I looked at it myself, and then we all went back to look at it together. We thought it would be ideal, and we couldn’t believe our luck, even though it was quite run down. As Sean commented at the time, even the rats had emigrated.

Nothing much had been done to the premises for four to five years, as the previous occupants had known they would be moving on, so had done only the essential maintenance. The school had been cannibalised. When it was closed, all the neighbouring schools had been invited to come along and help themselves to anything they needed, such as desks and chairs.

By the time we looked around inside, the roof had holes in it and was leaking badly, trees were growing through the windows and vandals had smashed the sinks and toilets off the walls. The premises had catered for special-needs children but had since been deemed unsuitable for children with wheelchairs, so a new school had been built to house them nearby. We peered through the windows. The school was in a pitiful state. Blackboards and
lockers had been removed and paint was peeling off the walls but, to us, it was perfect.

When we approached Hillingdon Borough Council we were told that a housing association had been buying up a number of buildings in the area and wanted the Moorcroft site too, but we countered that the building would make an ideal location for a specialist school for children with autism.

By now the housing association already had outline plans in place to build 38 homes on the council-owned site. It proposed to demolish the former special-needs school. The council was proposing to allow part of the adjacent 18th century mansion to be used for housing and to sell the remainder of the building for use as an institution, possibly a nursing home.

With time slipping away, we contacted the head of client services at Hillingdon Borough Council, Mary Milne, to express our interest in the site. Mary said she would see what could be done and suggested we put in a proposal. We took her advice and submitted a proposal for a suitable school for children with autism that was not like an institution and as near as possible to a mainstream environment – a safe environment where the children would be free from bullying.

The council and the education department were already familiar with Sean and me because of our ongoing battle to secure education for our boys. Sean had to give a presentation of our plans at a council meeting – as did the housing association for its own scheme – in a bid to persuade the council to our way of thinking.

Basically, the housing association had brought along a barrister to bolster their case. Nothing wrong with that, but
they’d probably expected everything to go through in a smooth and uncomplicated manner as they put their case forward to the councillors and a representative from the Department of the Environment. After all, this was a public arena and they believed they had good public support for their plans.

The council, for their part, had also appeared sympathetic to the housing association, so we knew that Sean, myself, Alex and another of our supporters, the late Bob Hillier, would have quite a job on our hands to persuade them to look favourably on our intentions.

The representatives from the housing association and their barrister began their presentation and all seemed to be going well for them. Then questions were invited and Sean, although not on oath, was cross-examined by their barrister, who was obviously looking for weaknesses in our presentation.

If the barrister had reckoned that taking on Sean would be a walk in the park, he was soon made to realise he had a formidable opponent. Things started badly for the barrister, then got worse and the less said about the end for him the better.

‘This plan isn’t very feasible, is it, Mr Kennedy? You haven’t applied for planning permission or change of use, have you?’

‘It’s already a school,’ replied Sean. ‘What do I need planning permission for? Do you really know what you’re talking about?’

The barrister glowed red with embarrassment, and that, coupled with the fact that maybe there wasn’t quite as much community support for their project as they may have anticipated, meant the housing association’s case was scuppered.

Eventually, the housing association backed down and
councillors told us that, if we jumped through all the hoops they were going to put in front of us, there would be a possibility that we could use the premises as a school for autistic children, since there was obviously a need for such a facility in the borough.

Our plans were accepted unanimously. Sean was brilliant that night and, I have to admit, I was so proud to be his wife.

Now we had to really fight for the school. From that point on it seemed Sean, Alex and I would face endless bureaucracy as we tried to secure the premises. It was such a frustrating period. The negotiations and meetings seemed to go on for ever. We went to so many of them, some of which lasted for hours on end, yet not once were we ever offered so much as a cup of tea or a glass of water. In fact, I remember telling one councillor exactly how I felt. ‘There’s meetings about meetings – when on earth are we going to get some concrete information?’ Sometimes after leaving a meeting we would be thinking, What on earth was all that about? We were working in the dark, not having done anything like this before.

We used every means at our disposal to get our message across. At one council meeting, Sean stood up to give a speech and used the opportunity to speak as melodramatically as he could. ‘My kids are in the Last Chance Saloon,’ he said. ‘Can you really deny them what they really need?’ If anyone had said no they would have felt awful. Sometimes we had hostile questions from members of the public but Sean refused to be swayed and didn’t have any problem in dealing with them, such was his determination to get our message across.

I recall a time thinking that we’d been left hanging around for
so long for a decision that, if one wasn’t forthcoming in the near future, I’d break into the building and squat! Coral and Aunty Zita said they would bring me food and drink if I did. Furthermore, if we didn’t get a decision, I’d ring every radio and television channel I could think of and tell them why.

Hillingdon Borough Council calculated that a figure of
£
450,000 would be required from us in order to get Moorcroft into a fit state, but our charity, HACS, had only
£
3,000, so where the hell would we get that much money from? It was obvious HACS couldn’t raise anywhere near enough money and the banks wouldn’t entertain lending so much. A series of further meetings over the next couple of months with Hillingdon Borough Council ensued but each time it seemed that the amount of money they demanded from us would change. The total went down to
£
250,000, then up to
£
825,000, then a million pounds, until finally they settled for
£
627,000.

When the figure of a million pounds or
£
825,000 was mentioned we were convinced it was the council’s way of telling us they didn’t really want our plans to go ahead, that they were deliberately trying to price us out of the market for the Moorcroft site. The figures bandied about by the council had been based on their surveyor’s report on the property and the work that had been costed accordingly. What we couldn’t understand was why all these extra works that were appearing and putting up the price hadn’t been picked up in the initial survey. It just didn’t seem to add up.

The building adjacent to the school had been used by social services and the council had originally hoped whoever would
take over the former school would buy the entire site. The council knew we wouldn’t be able to take over the whole site. However, in the end, they sold the social services building separately for
£
1.6 million.

Our proposal had to be put before all the local political parties and we were dismayed to learn we might have to spend around a million pounds on refurbishing the premises over the following five years to have any chance of acquiring the school. Basically, Hillingdon Borough Council wanted hard proof that we could raise the cash before giving us their approval.

Although we felt reasonably confident we still had the support of most of the council, one councillor made it clear how he felt about our plans when he informed Sean that the council was not there to do us any favours. As far as he was concerned, the council had wanted to sell the entire site and it was our fault that the sale had not yet gone through!

Undeterred, with Alex’s assistance Sean and I put a business plan together over a couple of nights. We took our plan to a number of banks without success and rang several others but, although most of them agreed it was a good idea, they questioned what we really knew about running a school and, unsurprisingly, turned us down. It seemed HACS didn’t have a cat’s chance in hell of securing the money required to take over the site. Our hopes were further dented when, after approaching one charitable foundation for support, we were told, ‘I’m sorry but we don’t give to autism because it’s not fashionable at the moment.’

We decided to contact the National Autistic Society to see if they would help fund our cause. Sean, Alex and I travelled up
to London for a meeting with the chief executive at the society’s City Road headquarters. The society had a serious amount of money, with lots of assets. The chief executive met us in a sumptuous meeting room and the meeting went on and on. We showed him our plans for the school and explained we needed to raise
£
627,000. We were rock solid on our business plan. Could the society help us?