Not Stupid

by Anna Kennedy

  ‘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.

  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.

  Chapter Five

  A Leap in the Dark

  Despite 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.