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 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!
I hopped into the car and drove off. Where shall I go? I wondered. I ended up in the rear car park at Hillingdon Manor School, just yards from our home. I parked up and tried to gather my thoughts – which would have been much easier had I not received a number of telephone calls from Sean asking me where I was and when I’d be back. ‘I’m out – leave me alone!’ I switched off my phone for a while, but when I switched it back on it listed around 30 missed calls from Sean and Patrick!
Other times when I’ve been too stressed to stay home I’ve driven to a nearby park, then telephoned my sister for a chat.
‘You’ll be all right,’ she always tells me. ‘After all, you wouldn’t be able to cope with a normal life!’