Not Stupid (21 page)

The trouble is, when he puts on his TV he likes to put it on at full volume and we are often awoken by a
Thomas the
Tank Engine
video blasting out in the wee small hours! It’s amazing how many children with autism are hooked on Thomas. Back in 2002, the National Autistic Society commissioned a small research project to understand better the special relationship between children with autism or Asperger Syndrome and this programme. It seems Thomas has, for some children, been a vital point of entry into the world of communication and play – so much so that the National Autistic Society has seen fit to launch a larger-scale research study to investigate this special connection.

Even now, Angelo still loves jumping on trampolines – they are a very good stress-buster for him. We have a large one in our garden and it has saved us a fortune in beds and sofas. We first purchased a trampoline because Angelo had been
constantly jumping up and down on our bed. In fact, he’d broken several beds by then. We’d even bought a metal bed, but he broke that on the day it was delivered. Eventually, my brother made up a plinth out of strong wood and we bought a couple of mattresses and now we sleep on those instead.

We’ve had more than a few sofas, thanks to Angelo’s jumping exploits, and he has often damaged furniture with his inappropriate behaviour. One day I came downstairs after having made up the beds to find that Angelo had cut the nylon base of a chair with a pair of scissors and had slid into the hole he had made. The only part of him visible was his head!

Even now his behaviour goes through phases. He’s currently resumed an earlier pastime of throwing things over the fence into our neighbour’s garden. Fortunately, our neighbour Bernie works at the school, so he fully understands the situation, but, most weeks, he comes around with a carrier bag full of items that he’s found in his garden. Sean had bought me a brand-new pair of binoculars prior to a George Michael concert at the new Wembley Stadium. It would be our first night out together in months, but the binoculars disappeared and reappeared only when Bernie knocked on our door. Other items thrown over into his garden have included a
£
20 note, videos, CDs, balls, toys, bras and knickers.

The reasons behind some aspects of Angelo’s behaviour remain a mystery to me to this day. I recall a shopping trip to a local Aldi supermarket when he was four years old. He refused to go past the entrance of the store. As we approached the doorway he began to scream and throw himself around in his pushchair. I tried to calm him down, but he was having
none of it. Each time I tried to go through the doorway he began screaming again. I decided to give up and to try and visit the store at a later date. When we returned, Angelo began to scream and wail. What was it about this doorway that triggered this response?

Later we visited Whipsnade Zoo and we experienced the same response from Angelo as we approached the entrance gate. It’s so difficult when a child has such limited speech as Angelo to get to the bottom of what it is that’s making him react in such an extreme manner.

Sometimes visiting friends triggered the same problem – we just could not get past their front doors without a screaming session. Nowadays, however, he’s fine when we visit friends or relatives. He just makes for their bedroom to lie on their bed. It seems this is a familiar setting for him and it helps him to feel at ease.

There are all sorts of therapies available designed to help people like Angelo – some, obviously, being much better than others. At Hillingdon Manor we have always been open to fresh approaches, which brings me back to November 1999, two months after the school first opened.

An educational employment agency contacted a teacher, Richard Walker, to inform him of our need for a Key Stage 2 teacher to cover a week-long period. Although there is normally a calm aura around the school, over the first few days after Richard arrived, the normally tranquil atmosphere was not apparent, with several youngsters either screaming or running around upset for one reason or another. Worse still, some members of staff had been bitten, urinated on or scratched – which was worrying, to say the least. Fortunately, this
experience did not scare Richard off and he remained to work his way through the week and, indeed, ever since.

In September 2000 Richard had the opportunity to attend an introductory weekend at the Institute of Craniosacral Studies, where he learned about working with patterns of resistance in the primary respiratory system – a name given to the core of the human body–mind system. It is believed the core of the system, the fluctuating movement of the cerebrospinal fluid, carries a healing potency that is taken up by all the fluids and tissues of the body to maintain health and order.

As the website of the Craniosacral Therapy Association of the UK explains, the therapy is:

Because the nature of the condition of autism and Asperger Syndrome is often apparent as a huge pattern of resistance, Richard became fascinated by the topic and was very keen to find out more about how the primary respiratory system worked, convinced it would make a contribution to the children and staff at the school.

Over the following years, he has used craniosacral therapy at Hillingdon Manor. Richard observed how the triad of impairment was apparent among the pupils at the school. Some, when they were upset, were perceiving stress that was not really there and had a psychological perception of danger rather than being in a situation where there was danger. Stress, when perceived, is transduced into soft tissue contraction and, when sustained over a period of time, leads to the activation of the fight-or-flight mechanism in the nervous system.

The mind and body of an autistic person are upset together. Richard noted that new arrivals at the school were constantly on the alert, their brains and bodies becoming unconsciously adapted to higher levels of stress, which, in turn, tended to lead to overstimulation of the immune system, which created a struggle between it and the nervous system, resulting in susceptibility to immune suppression and hyperactive disorders. From a soft-tissue point of view, this involves depressogenic responses and resignation. In other words, it
results in upset individuals constantly being on the edge of a fight/flight response who, over a period of years, may show hyperactive disorders.

Being able to predict what is going to happen plays a large part in reducing anxiety levels. Teaching pupils how to relax on a daily basis obviously helps and this, coupled with Richard’s craniosacral therapies, has enabled pupils to demonstrate an emerging ability of clearing up upsets with decreasing levels of support from members of staff, which also helps the pupils to repair and maintain relationships with others in their lives.

In a nutshell, the Craniosacral Therapy Association – a member of the British Complementary Medicine Association – states,

Richard felt the above probably applied to Angelo and, together with Angela, he suggested the possibility of a pilot project that consisted of six craniosacral sessions between April and July 2004. In his resultant notes, Richard recalled Angelo’s behaviour and responses over this period of time. He recorded how, at first, Angelo would not allow him to hold his head and rarely made eye contact, other than asking Richard’s name.

Later sessions saw minute breakthroughs, with Angelo
co-operating
at times and occasionally making contact, and even placing Richard’s hands on his head and allowing him to cradle him.

A year later, in July 2005, Richard approached me to suggest the possibility of further sessions with Angelo. Not only was this for Angelo’s benefit but for Richard’s, too, as he wanted to use the sessions as part of his coursework for his craniosacral practitioner training.

His notes over a nine-month period recalled several aspects of Angelo’s behaviour and life as it was at the time. It took a while for Angelo to accept Richard in his space but, over time, this improved and he allowed Richard to cradle him on several occasions or rock him back and forth. He reported how, time and again, Angelo would hold his left ear and say, ‘Help me.’

Angelo would repeatedly recite
Thomas the Tank Engine
stories loudly at night, often from around 4 a.m. to 7 a.m., but, by the second month of Richard’s trial, I noted more clarity in his words rather than the gibberish I’d become accustomed to. Could this have been anything to do with the craniosacral sessions?

He became more responsive to verbal commands, for example, ‘Angelo, please go upstairs and get yourself a clean shirt.’ Nine times out of ten, he would do so – and put it on the right way round without any further prompting. On two consecutive Saturdays, he even used the toilet to have a poo. This was, indeed, progress, although he was still wetting his bed every night and even when he was awake.

After a period of not seeming too bothered about his ear, Angelo became very vocal and was again holding onto his ear.
He was in obvious discomfort. We wondered if this could have been an after-effect of the severe ear infection he had as a baby, but an X-ray revealed nothing of any significance.

December 2005. We’d had a total of just four hours’ sleep over a 72-hour period but were pleased to note an improvement in eye contact. Angelo began practising his words in his bedroom. As we listened we heard him say, ‘Hello, what’s your name? My name is Angelo.’

January 2006 was a particularly challenging time. Angelo wet my bed seven times in a week; he just wouldn’t go to the bathroom in time. He also defecated on his bedroom floor and then smeared the faeces on his body and the television.

However, his annual review at school the following month revealed some improvements. There were three main achievements, including an emerging ability of communicating effectively while using a computer; making better eye contact and focusing on tasks for longer periods of time; and a willingness to try more foods such as baked potatoes, tomato soup, tuna and chicken legs.

At home he was beginning to show more willingness to eat with the family at meal times and, after I’d been shopping, he would often help me to put the frozen food away in the freezer.

Over the period of the craniosacral therapy, Angelo’s efforts at school had seen him make progress across the curriculum. His end-of-term reports indicated considerable progress in the activities he seemed to enjoy and those that had meaning for him.

After the final session, Richard had to decide whether or not there had been an observable connection between Angelo’s
academic progress, his social skills and the craniosacral sessions. Could these be quantitatively linked?

In his conclusion, Richard decided that there had been no obvious link but noted how Angelo’s ‘way of being’ had shifted and evolved over the two-year period he had been involved with him.

So, the question remains as to whether or not craniosacral therapy is an effective way forward. To go into all the ins and outs of this therapy would require a book on its own, but the possibilities for its further use at the school are still being explored with a view to possibly utilising it again in the future.

All the time we’ve wondered what the problem has been with Angelo’s ear, as he’s often held it or asked for help, but could not explain what was wrong. Various consultants have failed to identify the problem but, when Richard did the craniosacral therapy with Angelo, he wondered if tinnitus could be the problem. We reckon he could be right – especially as it’s a condition known to be in our family.

O
ur lives are obviously mostly taken up with our commitments with the schools, Summacare, Autism Consultants, the college, the residential home and supporting HACS. Fitting in time for ourselves is often difficult and it seems I now live my life from one meeting to another. I have a very full diary.

Apart from being a director of Moorcroft Manor Ltd, Autism Consultants Ltd, Summacare and the college, I am also a volunteer at HACS Playscheme and a registered person at The Old Vicarage, and I’m also teaching dance and exercise.

As a marketing director, it’s my responsibility to ensure that the Hillingdon Manor Group of the college, The Old Vicarage, Summacare and HACS have a good public profile and constantly to raise public awareness of autistic-spectrum disorders by attending open days and doing television, radio and newspaper interviews. I also attend fundraising events and
functions throughout the year to promote all three companies, including the charity.

I need to keep up to date with all competitor activity and, wherever possible, to liaise with other service providers such as Partners in Autism, the National Autistic Society, the TreeHouse Trust and the All-Party Parliamentary Group on Autism to improve our own services wherever necessary. I also give five dance classes each week at Hillingdon Manor and at the college, and these require weekly planning and end-of-term reporting.

In my capacity as a registered person at The Old Vicarage, I support and oversee the registered manager and try to ensure that the high standards required in the running of the home are met and maintained through adherence to the home’s policies and the Commission for Social Care Inspection regulations. I have to ensure that the Registered Homes Act 1984 and Care Standards Act 2000 are followed and have to attend weekly progress meetings. Further meetings are held to discuss and monitor the ongoing development plan for the home.

I have to be on hand to provide weekend and/or holiday
on-call
support and to provide monthly inspection reports to the Social and Care Standards Commission, and I manage the senior management team’s supervision and their annual appraisal. In addition to this, I attend annual reviews for service users as and when required. I ensure there is adequate maintenance and I interview staff for the home. I liaise on a regular basis with the contracts manager for the home to acquire updates on prospective residents and I also liaise regularly with the
human-resources
manager on any up-to-date issues.

As one of the directors at the college, I support and oversee the principal. This is done on a weekly basis by email, telephone or personal visits. I attend monthly senior-manager progress meetings and liaise regularly with the contracts manager for updates on prospective students. Further liaison meetings are held with the human resources manager and the health and safety officer, and there are meetings to monitor and discuss the college’s development plan.

Add to this the quarterly reviews of the senior management team and their annual appraisals and my involvement in monitoring quality at the college and contributing to the
self-assessment
report. I also attend bimonthly Hillingdon Safeguarding Committee meetings, where any relevant information over the serious safeguarding issues affecting the protection of vulnerable adults is disseminated, and, for the same reason, I attend Partners in Autism Committee meetings, and the All-Party Parliamentary Group on Autism committee meetings.

I am responsible for monitoring the safeguarding issues with the college’s principal and I network with competitor activity and, where possible, liaise with them. I locate work placements for the students through existing and future employment contacts, and support and monitor the leadership team to ensure they fulfil the quality of education expected at the college and meet the standards demanded by the Learning and Skills Council and other national bodies. I attend open days for parents and business providers and ensure the college site and its resources are adequately maintained.

As a co-founder of HACS, I support its play scheme through
my role as a volunteer driver, and I attend monthly evening meetings, as well as supporting the charity director by attending presentations and functions to raise the charity’s profile.

As a director of Summacare, I attend regular meetings and, as a director of Moorcroft Manor Ltd, I attend bimonthly meetings with the other directors to monitor the development and progress of the group and join them in reviewing our strategic development plan for all three companies. Other meetings include quarterly shareholders’ meetings, quarterly meetings with National Autism Society Partners in Autism, bimonthly Metropolitan Police meetings, which raise the awareness of autism at police recruit and training stages, and quarterly safeguarding-adults meetings.

On top of all these meetings there are conferences and courses I need to attend to keep up to date with current issues, the following being just some attended within a 12-month period: Sensory Perceptual Issues in Autism; Living with Autism; Sexuality in Adults with Autism; Speech and Language in Autism; How to Write a Social Story; Dealing with Unacceptable Employee Behaviour; An Introduction to Autism; Disability Discrimination Act for Managers; Assertiveness in Management; Conflict Management Skills for Women; How to Do Effective Counselling; Diabetic Training; A Positive Approach to Autism; Understanding and Working with Autism; An Introduction to Adult Protection; Investigating Adult Abuse; Quality, Quality Everywhere; Non-abusive Psychological and Physical Intervention; The Importance of Consistency and Positive Behaviour Management; Understanding the Brain, Understanding Autism; Relationship Counselling for People with
Asperger Syndrome; Diagnosis of Autistic Spectrum Disorders; Positive Approaches in Managing Behaviour; and, finally, Sexuality and Individuals with Autistic Spectrum Disorders.

As with any business there are frustrations but it seems, in my world, someone, somewhere obviously feels I haven’t got enough on my plate! While I accept that the authorities have a responsibility to ensure young people are properly protected from individuals who may not have their best interests at heart, recent events seem to show they have been taking these measures to extremes. Anyone working with children has to be scrutinised by the Criminal Records Bureau, and that makes perfect sense. If they consider you are fit to work with young people you are issued with a certificate to show the Bureau has approved you to do so.

I would have thought that, as the owner of one of these certificates, I would have been okay but that’s just not the case. In a case of bureaucracy having gone bonkers, I’ve had to apply for Criminal Records Bureau checks on five occasions in the past two years! First of all I needed one for Hillingdon Manor, then I needed another for the college, then another for the residential home, another to cover my work as a volunteer, and yet one more for my roles as a director and proprietor. Now, I’m told that, as a mother who needs to accompany my own child to school, I need another Criminal Records Bureau check! It’s barking mad.

While Patrick and Angelo had been receiving home tuition I benefited from three hours’ respite every fortnight, thanks to a lovely man called Derek Jones, who later went on to work at Hillingdon Manor. However, once we’d opened the school and
the boys began their education there, the powers that be saw fit to withdraw the respite care. As far as they were concerned, I didn’t need it any more. Thankfully, though, through a private arrangement, Derek continues to care for the boys for a couple of hours a week after school and this enables me to work extra hours.

Fortunately, Zita regularly babysits for us, which, as you can imagine, is a true blessing. Sean’s mum Coral and her sister Pam have now moved down this way and, with Coral, Pam and Zita’s babysitting, Sean and I are able to attend a good number of meetings and to have just a little time to ourselves.

I still love to dance – that’s my safety valve. If I didn’t have that I’d probably end up in a psychiatric unit myself! Thursday nights are my nights for tap dancing from 8 p.m. to 10 p.m. and on Saturday mornings I dance for an hour. I actually went away for a tap-dancing weekend last year, staying overnight in a hotel. I felt really sick before leaving but my friends insisted they would drag me there if necessary because they felt I really needed the break.

Prior to leaving, I left Sean with a list – don’t forget this, don’t forget that – and I was really nervous on the way there but, once we’d arrived, I really enjoyed myself. However, I didn’t sleep very well because I was worried about how Angelo was coping without me around. I was awoken at 6 a.m. by a telephone call from Patrick to tell me he couldn’t sleep and wasn’t it time I came home because he’d just had to change Angelo’s bed? Thanks, Patrick!

HACS runs shopping trips for carers once or twice a year, which I really enjoy. Last time, we went to Brighton, but I
always have to ring home about five or six times to make sure all is OK. I have to laugh at our situation sometimes because if I didn’t I’m sure I’d go potty. Often I feel quite lonely living in a house with people with autism. I have to look after them, sort out all the bills, savings and finances, everything – though Sean now takes charge of all the shopping. I also get support from my sister even though she still lives in Middlesbrough. She reckons I couldn’t have married and had a regular family because I would have been bored out of my head; that I’ve thrived on challenges, that I could do anything I put my mind to.

Do I ever think, Why me? Only for a second. The thing I crave most is just a little peace and quiet – and some sleep! When Angelo was much younger I felt as though I was on automatic pilot owing to the lack of sleep. I felt really weird. Drained. I was always exhausted, as though my shoulders were dragging on the floor. At first it was hard to function with
day-to
-day life.

Some mornings I still get up at four o’clock, having not gone to bed until past midnight, but I think my body’s got used to it now. On the odd occasion that I do sleep well, I feel worse for it when I wake up – like a zombie, even more tired. Sometimes I feel like rolling up in a ball and hibernating for a few months to recharge my batteries.

Recently, I’ve been having weird dreams. I see myself holding a baby – a little girl, I think – and I keep putting her down but, when I turn around again, I can’t see her and I get really stressed and cry. Then I find her again, hold her in my arms, then I put her down again and the process is repeated.

Sometimes I wake up sobbing. My sister is into dream analysis and she thinks there could be two reasons I have this recurring dream: first, I’m thinking about the baby I miscarried; second, it could be my ‘other baby’, the school – how I’m getting stressed out as we look towards securing its future.

We’re still having a very difficult time with Angelo. He’s been replicating what we believe is the sound he’s hearing in his ear – a consistently high-pitched whining noise, and he’s driving us all barmy going ‘eeeeee’ all the time. Even when he’s at school Angelo constantly replicates the noise for hours on end. It goes right through you; it must drive everyone around him mad. One night I just couldn’t sleep because of the noise, so I went downstairs, put cotton wool in my ears and tried settling down on the sofa – but I could still hear him. It must be so tiring for Angelo, too, and stressful.

There have been some encouraging signs though. We have recently acquired a little dog who we’ve called Chanel. Patrick had repeatedly asked Sean and I if he could have one and eventually we gave in. She’s a little Jack Russell-Chihuahua cross and Patrick loves her to bits. Angelo, though, was not at all keen to be sharing his home with this four-legged interloper at first. If Chanel walked into a room, Angelo would walk out. Nevertheless, Chanel persistently followed Angelo around until eventually she won him over, which was lovely. Animals such as dogs can play a huge part in breaking down barriers with children on the autistic spectrum and it’s wonderful to see Angelo now accepting Chanel, even to the point of allowing her to sit on his tummy while he gently strokes her ears.

I’m not a material person – although sometimes I feel as
though I’d love to have a Ferrari with a number plate that says ‘BYE BYE’ on it! That said, I feel I have grown as a person over the past few years. I always felt as though people such as doctors, psychologists, teachers and the like were all far superior to me – they were better educated and cleverer – but I’ve since realised they are just ordinary people and, nowadays, I am far more comfortable around them.

Sean will soon take up a post as a barrister, and they sometimes host barristers’ dinners at Inns of Court. I would have found this quite intimidating a few years ago but now I feel really comfortable in their company and I get on well with them all.

As for friends of my own, well, I split them into two categories – my ‘autistic’ friends and my ‘normal’ friends. I can talk to my autistic friends about the problems I have been facing and experiencing, and I know they will understand where I’m coming from because they’ve been in similar situations. That’s not meant to be disrespectful to my ‘normal’ friends, it’s just that they can imagine only certain experiences.

Sometimes, even at home, things do get on top of me and I feel my head is about to explode. Once or twice it’s gotten so bad I’ve got in the car and driven around a bit, then parked up and had a cry. Often it’s just silly things that get on top of me. It’s like a build-up of tiredness and frustration and a lack of sleep.

Occasionally, I feel I’m being taken for granted at home, and that’s quite hard to cope with. On the last occasion, Sean and Patrick were having a bit of an argument. The trouble is, neither of them likes to give in and they were at loggerheads. Then Angelo started walking around on his hands and knees,
making a wailing, droning sound, and I remember thinking, What the bloody hell’s going on around here? I’ve just got to get a little peace!