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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-centered 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 councilors 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. My book,
Not Stupid, was published in the UK in April this year. The book describes my
fight to provide life long education and support for my 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
my family as they struggled to establish Hillingdon Manor School. |
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