Not Stupid

by Anna Kennedy

  Now, even though Angelo’s in his teens, we have only a slightly better routine in the evenings. We usually try to get Angelo to bed at around 11 p.m. We could get him to sleep at 8 p.m. but, if we did, he’d be awake again by 11 p.m., and that’s no good for Sean or me. So, at 10.30 p.m., we start the process of getting him to bed. We take him upstairs to his room, though quite often he’ll just follow us downstairs. Again, we take him upstairs until he decides to stay there to watch either TV or a video, or perhaps to look at his books.

  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:

  a subtle and profound healing form which assists the body’s natural capacity for self-repair. In a typical craniosacral session, you will usually lie (or sometimes sit) fully-clothed on a treatment couch. The therapist will make contact by placing their hands lightly on your body and tuning in to what is happening by ‘listening’ with their hands. Contact is made carefully so that you will feel at ease with what is happening. The first thing you will probably notice is a sense of deep relaxation, which will generally last throughout the session. With subsequent treatments this release of tension often extends into everyday life. The work can address physical aches and pains, acute and chronic disease, emotional or psychological disturbances, or simply help to develop wellbeing, health and vitality.

  Craniosacral therapy is so gentle that it is suitable for babies, children, and the elderly, as well as adults and people in fragile or acutely painful conditions. Treatment can aid almost any condition, raising vitality and improving the body’s capacity for self-repair.

  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,

  In response to physical knocks or emotional stress, the body’s tissues contract. Sometimes, particularly when the shock is severe or occurs within an emotional situation, the tissues stay contracted. Any stresses, strains, tensions or traumas which have been ‘stored’ in the body in this way will restrict the body’s functioning and may give rise to problems over the years.

  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.

  Chapter Fourteen

  A Busy Schedule

  Our 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 co
ntributing 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.