Not Stupid (12 page)

The pupils’ needs would be met in accordance with the human needs and resources identified by Joe Griffin and Ivan Tyrell in their book
Human Givens
. This requires pupils to make choices about their responses to their own behaviour. Staff would aim to encourage self-cognitive self-reflection and personal responsibility in behaviour management to support the development of the observing self.

Staff would also be encouraged to support the pupils to identify clearly the cause of anything upsetting them, then to discuss the cause with the child to guide them into making an effective choice about how to deal with the situation and how to clear up any negative results of behaviour that does not work, clearing up with whoever has been affected, and moving forward.

The school would also offer a parent-training session on a
termly basis to provide theoretical and practical information, and advice and strategies that would support the families of children with autism in the home. The sessions would cover such areas as promoting good behaviour, behaviour management, transactional analysis, relaxation, holding for wellbeing, and the Human Givens Approach which, in itself, requires further explanation.

The human needs as defined by the Human Givens Approach are as follows: 

• Security: A safe territory and an environment, which allows us to develop fully.
  
• Attention: To give and receive. This involves a sense of autonomy and control; being emotionally connected to others; being part of a wider community; friendship, fun, love and intimacy; a sense of status within social groupings; a sense of competence and achievement.
  
• Meaning of purpose: This comes from being stretched in what we do and think. 
  

With this in mind, a trained Human Givens therapist would be appointed to assist the pupils in solving their problems and helping them to move forward with emotional issues. This confidential service would also be made available to parents.

Because an autistic child may not fully understand when being told no, the good-behaviour policy adopted the stance that the word no should not be used when referring to a pupil’s behaviour. Instead, the pupil’s name should always be preceded by the word stop. No, however, could be used in answer to
curriculum questions or in relation to unacceptable actions – for instance, the rule is ‘no hitting’.

When dealing with misbehaviour, a pupil should be supported by the offer of a choice, linking the expectation with the action and the consequence. For example, the school expectation is ‘to listen to the adult in charge’. The pupil may choose to listen to the adult in charge and do what works, or they can decide not to listen to the adult in charge, not do what works and not have free time at break time. One choice, therefore, is educationally, socially and physically advantageous to the pupil with an individually positive outcome; the other is unacceptable educationally, socially and physically with an outcome less desirable for the pupil.

If a pupil is experiencing upset or their information processing is reduced, further clarity would be required. In this instance, staff would hold out two hands, palms upwards. Pointing to one palm, a staff member would say, ‘[Pupil’s name], you can choose that a and b will happen.’ Then the staff member would say ‘[Pupil’s name], or you can choose that c and d will happen.’ Working in this way would require staff to know what each pupil’s powerful positive and negative reinforcers are and this approach would also require close liaison with parents. If the pupil then refuses to choose, the staff member would say, ‘Not choosing means you are choosing that c and d will happen.’

Of course, there would always be the possibility that a pupil’s emotional charge would be so high they might become a danger to themselves and to others’ health and safety. A
physical-intervention
policy was drafted that would be implemented if
ever staff felt it appropriate to step in to deal physically with a situation. Staff would be trained in the use of ethical and legal physical intervention as approved by the British Institute of Learning Disability.

We also had to consider the probability that not all pupils would have English as their first language. We would need to reflect the cultural diversity that exists within our wider community. Of course, every aspect of education at Hillingdon Manor would be conducted in English but we needed to recognise that, for children who have English as an additional language, the complexity of their needs must be considered in addition to their communication impairment.

Our speech-and-language therapist would be required to assess the communication needs of these children and to work with curriculum staff and parents to develop an appropriate communication system that would include strategies and resources to support both understanding and use of communication.

The criteria for consideration for admission to Hillingdon Manor would include that the child’s needs should arise out of their autistic-spectrum disorder, and some other related pervasive developmental disorders; the child would have their needs recognised through appropriate funding by the sponsoring local education authority; the child would have the commitment and support of their parents/carers to the educational approach used at the school through parents agreeing to a home–school contract; the principal would be satisfied that the needs of the child would be met; the principal would decide, using admission procedures, which children
would be admitted to the school and would seek to ensure a balance of age, compatibility and gender; and admissions would be made on the basis of availability of placements, taking into account the above factors, plus a child’s level of functioning, learning and difficulties and age.

The school would be ‘human-being-centred’, meaning it would place strong emphasis on equal opportunities with respect to gender, race, sexual orientation, religious belief and disability. The school would be committed to using the latest research into human brain functioning to refine and improve its practice. It would also be committed to keeping abreast of new research into autistic-spectrum disorders and to assess its implications for improved practice.

The policies adopted by Angela and Karen proved sufficient for approval from the Department for Education to open the school. Now, at last, we could advertise and release news stories to the media that we were hoping to open to pupils in the near future.

Thanks to the
Video Diaries
programme, teachers had become aware of our project and, learning that opening was near, some contacted me to express their interest in positions at the school.

This led to a further three to four days of interviewing, the panel consisting of myself, Angela and Karen. I thought I might feel a little out of my depth during this period but, surprisingly, that was not the case. I guess I’m a pretty instinctive person and I seem to know if someone feels right; but I’ve also learned that, just because someone presents you with a fantastic reference, it doesn’t necessarily follow that they’re all they’re cracked up to be.

It was so important to get a good staff team – one that would
work together – which ultimately proved difficult over the first 18 months to two years after we opened when some members of staff expressed a desire to do their own thing rather than work in the same manner as the rest of the team. Frankly, that just doesn’t work with children with autism. Again, consistency is the key and that is what we had to strive for throughout.

Specialist speech-and-language therapists who could effectively address the communication disorder symptomatic of autism were particularly difficult to find. Individual education plans needed to be implemented for each child depending upon their specific difficulty. We were fortunate to discover a really good agency, which found positions for therapists from as far afield as Australia, New Zealand and South Africa. Many of the therapists who joined us from this source remained with us for two or three years, then, on returning to their native countries, told colleagues about us. They then applied to come and work with us, too.

Some of the staff who had joined us had children of their own with autism. One lady with an autistic son began working with us as a support assistant and went on to become our administrative assistant; our maintenance man had a son with autism; the grandfather of a deaf and autistic boy also joined us to cover the electrical work, as did Alex’s brother-in-law, who also works on the maintenance side of things.

The borough referred children to us and we would look at the paperwork made available to see if we could provide a suitable learning environment for that particular child, basically, to see if they met our admission criteria. If so, they would then be assessed.

This sometimes proved very difficult. Because of their autism, some children find it problematic to be assessed, which meant we occasionally had to carry out this process in their own homes or go to the school or nursery where they were at that moment in time. This task fell mainly to Angela and Karen.

We were delighted when our MP, John Randall, invited Sean and me to bring the boys to the Houses of Parliament in London. After all the hard work at the school, a day out was a welcome treat. I didn’t know how the boys would react but it was a new experience for them and a very interesting one for us. Angelo was mesmerised by the House of Lords, and all had been going well until he dived under a security ribbon and made a beeline for the Queen’s chair and sat on it.

An agitated security man was quick to react and stepped in to shoo him off: ‘Stop, you can’t sit there!’ Angelo instantly became cross – he’d liked the chair and wanted to remain seated on it – so Sean had to pick him up quickly and carry him off as he kicked and screamed in protest. ‘Keep calm,’ said Sean to the security man, ‘my son’s autistic.’ Then he added cheekily, ‘You’d better check the chair, mate, because he tends to wee on chairs!’

After Angelo had calmed down we went for lunch on the terrace of the Houses of Parliament, which we all enjoyed. On a table nearby was the then Chancellor (now Prime Minister), Gordon Brown, accompanied by some of his colleagues.

At the end of our visit John gave us a bottle of House of Commons wine that had been signed by the then Prime Minister, Tony Blair, for us to auction to raise money for repairs to the school.

A
fter much hard work by all concerned, the big day finally arrived. The school opened on 4 September 1999 and you could not imagine the lump in my throat as the doors opened and the children walked in for the first time. Sean could hardly believe it either. We’d done it!

We weren’t the only happy ones. Other parents, many of whom had presumably faced similar obstacles to our own, were thrilled to have found somewhere their children could come, where they could learn in a calm and relaxed environment and be totally free from any bullying, which, unfortunately, many children with autism face when there is no option other than to attend mainstream schools.

Suddenly, we received flowers, donations, letters and cards of appreciation from parents, many of them pointing out that, if it hadn’t been for our determination, their children would have been seriously disadvantaged educationally.

We started off with 18 members of staff and 19 pupils,
though Angelo and Patrick were the last two to be funded by the borough. We didn’t find out we’d secured funding for them until a week before we opened, which was ironic, to say the least. I’d been thinking how crazy it was that, having got so far, I still didn’t know whether my own children – the inspiration behind this project – would be able to attend themselves.

The classes had been named after colours and birds and other attractive things, which, we felt, added to the calming atmosphere. Although it was Patrick and Angelo’s first day of schooling for some time they, at least, were familiar with the surroundings, having accompanied Sean and me to the school so often during the refurbishment project. Nevertheless, I was still wondering how they would cope. At this stage, neither Patrick nor Angelo comprehended that all this work we had undertaken had been because of them; that’s become apparent to them only in more recent times.

Angelo had always loved being at his mainstream nursery – and that’s what had made it so galling when we were told there was no place for him at St Mary’s School. At Hillingdon Manor, he started his first term in Rainbow Class. Although he didn’t mix well with other children, he seemed happy enough at the end of his first day and it was encouraging when eventually he allowed another child called Richard into his ‘space’.

At the end of the first day, the staff, like Sean and me, were absolutely ecstatic. We were on a real high. Everyone was in a really good mood and no one could believe how well everything had gone – even though we were all absolutely shattered! There was such a nice buzz about the place and parents picking up
their children were anxiously asking us how their child had got on. Seeing their faces when we told them their children had been absolutely fine was a very rewarding experience and Angela, when asked how she felt, told our local newspaper, ‘I keep crying. I am always telling Anna this is a bad place for my mascara because I am always being moved by kindness and inspired by her dedication.’

Thirteen-year-old Matthew also enjoyed his first day at Hillingdon Manor. There had been suspicions he might be autistic when he was attending a nursery school but he had not been diagnosed with Asperger Syndrome until he was 12, and it was not until a year later that he received a statement of special needs.

This lack of accurate diagnosis had caused Matthew to endure a torturous time in mainstream education. He had become a source of derision and had been bullied ever since his days in the reception class. Not only that, but other children who made the effort to befriend him had found themselves the subject of bullying too.

Life, thankfully, was transformed for Matthew after he joined his peers at Hillingdon Manor and, at the end of his first day, he happily told me, ‘When I sat down for lunch, nobody got up and walked away’ – which, apparently, had been a novel experience for him.

On his second day at school Patrick became upset when a newspaper photographer wanted to get a picture of him and Angelo walking through the doors. Patrick is not a morning person, so he didn’t feel at all comfortable with the attention of the photographer and made his feelings plain. Nevertheless, he
was glad to be with other children. All his classmates in Blue Class had Asperger Syndrome, which is probably why he announced he now had friends – and he’d never really had friends before.

Each child was given a home–school book in which their teacher wrote down how the child’s day had gone. The idea was that the parent could read the book at home and then tell us what sort of night their child had had and what to expect from them the next day. It’s all about consistency in their home and school lives, which is of such importance with autistic children that it cannot ever be emphasised strongly enough.

Consistency is key. It’s no use having a structured routine at school if it is not maintained at home. That is one of the most difficult things for a person with autism to come to terms with. Take Angelo, for instance. We talk to him in short sentences. Give him a long sentence to contend with and you’ll lose him. At school and at home, everything is put over to him in a concise manner. That’s the only way he can cope.

With the exception of one boy, all the children seemed more than happy to return the next day. In fact, this particular boy cried every morning when he was dropped off for school over the first two or three months but, as soon as his mother left him, he was absolutely fine straightaway.

The majority of pupils had already been statemented favourably, which enabled their parents to send them to us. Otherwise, there were just two children whose parents had to dip into their own pockets to finance their children’s places with us at Hillingdon Manor, and that was a considerable expense:
£
22,000 a year per child. Local authorities were able
to place children in the school for
£
27,000 a year but that compared favourably with the alternative of residential places, which would have cost in the region of
£
100,000.

Our aim was to keep class sizes limited to seven children per class. This was achieved with one teacher and one support worker to each class, while some children, like Angelo, required one-to-one support, depending upon their individual needs.

The first day at school for any child can be a traumatic experience. With autistic children entering a strange environment, with its new smells, new teachers and so on, we knew this would be a particularly difficult experience, so the decision was taken to admit some children on the first day and the remainder the next.

Surprisingly, the children all seemed to settle very quickly at Hillingdon Manor. I’d expected it to be mayhem but, within a couple of days, they seemed happy enough to be there. This has often been attributed to the calming environment generated at the school. Even when it’s busy, it’s usually a pretty quiet place to be, although, obviously, due to the nature of their condition, there were occasions when some children exhibited challenging behaviour and had to be held for their own wellbeing.

We even established a daily relaxation session for each class during which pupils lie on mats and listen to calming, soothing music. If they want a hand-to-foot massage, that’s what they get, subject to parental approval of course, and, if they wish, the children are allowed to sleep. Breathing exercises were also introduced as an effective antidote to stress.

A relaxation room is utilised whenever a child’s behaviour is
such that they are not engaging in the lesson and need to calm down. They can go there with a support assistant until they feel better. Sometimes they just need a short while to relax, maybe wrap themselves up in a blanket or listen to some calming music through headphones or read a book. They know themselves when they are ready to rejoin their classmates.

Behaviour has to be managed quickly and effectively. Sometimes it’s just not possible to manage behaviour in the classroom, so the relaxation rooms are very beneficial. All the staff are trained in ‘holding for wellbeing’, which means they know how to lead an autistic person, either by the hand or arm to an area where they are not going to harm themselves or anyone else around them physically.

Whatever their behavioural state, the children are always supported and safe. They may be encouraged to take up a particular relaxation position, maybe in the foetal position or any other familiar comfortable position that has been identified as beneficial to that particular child.

These sessions are most prevalent prior to lunch breaks or the end of the school day. Just think how useful they would be to people with autism in the workplace, to offer them a place where they could let off steam. But it just wouldn’t happen, would it?

Karen, in her role as home/school manager, devised an award chart as a tool to help the children better understand the behaviour and attitudes of others. The chart would feature photographs of parents and teachers either smiling or looking annoyed. If there had been a behaviour problem during the day, an ‘angry’ picture of the teacher would be circled so both
child and parent would recognise that things had not been so good that day. In the same way, parents could communicate with the school and their child, using pictures with various facial expressions.

Karen arranged for daily records to be kept that showed the targets set for each child in literacy and numeracy, and she carefully monitored the children’s communication skills. Physical and verbal responses were monitored, as these were seen as a crucial indicator of an autistic child’s progress. We also adopted a policy that every area of a pupil’s achievement would be celebrated with the presentation of a certificate. Once a pupil gained five certificates, a present was given to them, which helped the children who might otherwise never have done so to experience their personal successes.

Children were encouraged to bring in their own packed lunches, which enables their parents to control their intake. This is particularly important for children on gluten- and/or caffeine-free diets, and for children who react negatively to additives. It is also important that the children learn appropriate social skills at mealtimes, which are overseen by a team of trained lunchtime/play supervisors.

It didn’t take long for more and more people to hear about us. We had many visits from educational psychologists and psychotherapists, all eager to find out exactly what we were about. Then there were people from different boroughs with autistic children coming around to check us out and to compare notes. It got to a point where my main duty seemed to be that of tour guide because of the number of visitors who needed to be shown around every day, and I began to feel a
little like a parrot, having memorised my talk for almost every person I accompanied.

An inspector from the Department for Education, David Gardiner, paid a visit to the school just five weeks after our opening. Since it was a new school, it was important that the powers that be realised how well, or not, things were going. It was pretty stressful for us, as David spent the day just wandering around the school and observing lessons. We nervously awaited his verdict. As it was, we were pleasantly surprised. ‘I know it’s raw, and I know the whole building isn’t open yet,’ he said, ‘but, if I had a child with autism, I wouldn’t hesitate to send him or her to this school.’ Yes! What an amazing compliment! David commented on the calm atmosphere at the school and thought what had already been achieved with the children was remarkable. He liked the fact that we were operating as closely as we could to mainstream education.

Very few schools would have been inspected so soon after opening. David had been sent at the request of the department because there were so many outstanding approvals from local education authorities at our school. Because Hillingdon Manor at this time had yet to be registered with the Department of Education, this meant parents of children deemed to have special educational needs would be required to seek the approval of the Secretary of State for Education and Employment before their funding was to be put in place. At the time we had received 21 registrations for children and would need a further inspection for a registration of 42. Not only that, but quite a few London boroughs were becoming concerned at
the number of parents requesting placements at Hillingdon Manor. They came to see for themselves and liked what they saw. At least we now knew we were on the right track.

There were other occasions that made all our hard work seem worthwhile, not least when one mother told me that her son Robert had actually told her that he loved her. He had been at our school for only one day and, when he arrived home, he said, ‘I love you, Mum.’ She rang me in tears the next morning: ‘Robert’s never, ever said that to me. He obviously feels happy in the environment at your school.’

Two months after opening, we held our first Christmas performance, which was entitled
New Beginnings
because we felt it was most appropriate for a new school and the fact that we were about to enter a new millennium. Lots of parents, carers and volunteers assisted with the setup of the production, which ended with a rendition of ‘
Walking in the
Air
’ from
The Snowman
.

Afterwards, there was hardly a dry eye in the school and a memorable evening was completed with coffee and mince pies as autistic pianist Mark Bishop played Christmas carols and classical music in the background. What a lovely way to end what had been a very busy, hectic and, at times, a very stressful year.

Six months after opening, Hillingdon Manor was officially opened on 4 February 2000 by the TV presenter Esther Rantzen. I’d first met Esther when we made a follow-up video diary, this time for Meridian Television. Snippets of the video were screened each week on the
That’s Esther
show on ITV
over a period of six months. I was interviewed a couple of times by the former wife of the ex-Beatle Paul McCartney, Heather Mills, who was one of the presenters of the programme, and she was very supportive of our project.

Three months later this was followed up by an appearance on the daytime TV chat show
Open House
, hosted by Gloria Hunniford. Gloria was very interested in hearing about autism and my boys. Norman Pace from the comedy duo Hale and Pace was on the show as well. He was there supporting the Meningitis Research Foundation. Afterwards, he shook my hand and told me that what we had achieved was marvellous. He was very nice to me.