Not stupid: one woman’s fight for her sons’ education

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The remarkable story of one woman’s struggle to set up the new school her sons, and hundreds of other autistic children, desperately needed 

In January 1990 I gave birth to my first son, Patrick. At first, despite several health scares, it seemed Patrick was progressing normally. Then, at the age of seven, he began displaying erratic behaviour and became extremely distressed at school. His educational progress was severely limited.

Three years later, I gave birth to my second son, Angelo, who, at the age of two and a half, also began displaying most abnormal behaviour. At an assessment, Angelo was diagnosed with autism and, naturally, this was a scary and devastating blow for my husband, Sean, and myself.

Meanwhile, Patrick’s strange behaviour and protests at being taken to school intensified. He was diagnosed as having Asperger’s syndrome but, unfortunately, it was three years before this diagnosis was revealed to me and my husband! This meant that Patrick, wholly unsuited to mainstream education, had been forced to endure the trauma of not understanding what was required of him, and taunts such as “bird brain” from other children, at a school totally ill-equipped to cater for his specific needs.

Worse was to follow, in fact, much worse! A total of 26 special schools, within an hours drive of where my family and I lived, turned down applications for my boys’ placements. Doors were being shut in our faces on a regular basis and we hardly knew where to turn.

With a friend, I began a support group for families in a similar situation, which soon became fully subscribed. Faced with the difficulty of finding anywhere that would provide educational support for my boys, and our inability to find suitable childcare for children on the autistic spectrum in our locality, we took drastic measures. Having discovered a derelict school in Hillingdon, we approached the local council and asked if we could purchase it and turn it into a centre of excellence for children on the autistic spectrum.

There were numerous bureaucratic obstacles in our way, but we resolved to take on the endless red tape, small print and financial obstacles to turn this dream into a reality, despite the fact that we had no training in educational provision. This would be a daunting prospect for anyone, but with two young sons affected by autistic spectrum disorders (ASD), and a husband also diagnosed with Asperger’s syndrome, you can only imagine the endless stress, determination and hard work that was involved for me and my family.

Hillingdon Borough Council eventually agreed to lease the school to us, but at an asking price of £627,000! Obviously, we did not have such a sum of money in our bank account, but, even then, we refused to accept defeat; we re-mortgaged our small home and rallied the support of local councillors, local companies, charities and the media to get the venture off the ground. After much hard work, endless campaigning, tears and frustrations, we eventually found ourselves in a position to recruit an experienced headteacher and suitably qualified staff who would assist us in opening Hillingdon Manor School on 4 September 1999.

The school initially provided education and life skills to nineteen pupils between three and nineteen years of age, but that was just the start. Since then, Hillingdon Manor School has gone from strength to strength and has helped hundreds of children on the autistic spectrum to get the education they deserve and are entitled to.

However, because of the lack of suitable facilities elsewhere, the school soon became over-subscribed. As a result, I decided that we should take things even further. I was determined that other families should not find themselves in the position that my husband and I had endured with our own sons. The decision was taken to borrow enough money to expand the facilities we offered and, despite the personal financial risks involved, we pushed ahead with plans to open a new secondary school, which now provides specialist education for 95 children in total.

One of my chief desires, throughout all of this, has been to provide ongoing educational, vocational and life skills support for my sons and others. ASD are lifelong conditions, so there were real concerns for our sons’ well-being once they passed normal school leaving age. With the help of our supporters, I therefore took the decision to further enhance our educational provision by setting up the West London Community College, a small, independent life skills centre which caters for the specific and complex needs of adult students with ASD. Using a person-centred approach, we provide high quality individual programmes for each student.

Not content with our schools and college, I was looking even further ahead. Our team created an eight bedroom residential home, now known as The Old Vicarage, where adults with an autistic spectrum disorder live, with support from specially trained staff.

All in all, it has been an incredible journey, from the initial idea for Hillingdon Manor School to where we are now, and it has been far from easy. However, when certain councillors and bureaucrats seemed more than willing to hinder or oppose our plans, I refused to give up. There have been so many tears and frustrations, but I have battled through every barrier placed before me.

I am sure that all mums and dad with children affected by ASD are all too familiar with the endless sleepless nights, worry and sheer hard work involved in providing their children with a reasonable quality of life. It can be lonely living in a house with three men all on the autistic spectrum; however, I would not have achieved what I have without them, since they have given me the drive and passion to keep going.

Further information

Anna Kennedy’s book, Not Stupid, was published in the UK in April 2009. The book describes her fight to provide life long education and support for her boys and countless others, and it includes a glowing foreword by Esther Rantzen. Its title is derived from an hour-long BBC Video Diary documentary that was produced about Anna and her family as they struggled to establish Hillingdon Manor School.

In November 2008 Anna entered into a successful working partnership with Hillcrestcare Ltd. Anna’s latest project is a new online information portal for parents, carers and professionals who have an interest in autism:
www.annakennedyonline.com

Article first published in SEN Magazine issue 42: September/October 2009.

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