No school would take my autistic sons… so I started my own
And two decades after remortgaging her home to further her boys’ education, Anna Kennedy has transformed the lives of hundreds of children with complex special needs. But she insists her work is far from done...
WHEN Anna Kennedy was told her local school couldn’t help her two young sons after they were diagnosed with autism, she did what any devoted parent would do and began to search for alternative places. But after being turned away by 26 special-needs schools, she found to her despair that her efforts had come to nothing.
Still, Anna refused to give up. Taking matters into her own hands, she resolved to build and open her own school for her boys, Patrick and Angelo. The incredible decision left the family on the breadline, with Anna forced to remortgage her house to raise funds, but never for one second did she doubt she had done the right thing.
“It was difficult and very scary,” she recalls today. “We ran so short of money that we were living on 9p tins of beans, but all I could think was: ‘I need to do this for my boys.’ They weren’t mixing with other children and I knew it wasn’t healthy for them.”
Anna explains how Patrick was a clingy child and sought her attention constantly. When he started mainstream school, he was bullied.
“Every day he’d be kicking and screaming and wouldn’t go into the classroom.We went to a psychotherapist because his anxiety was having an impact on the whole family,” Anna says.
“I met one parent who had an adult child with autism who was in a mental health unit. I remember thinking, ‘I don’t want my son to end up in a mental health unit,’ so I vowed I would do whatever it took.
“It’s hard when you’ve got two children with significant needs and they’re not sleeping and you’re trying to work to pay the bills. But I’m a person who will keep banging doors down and that’s what I did.”
Anna found a derelict old school close to her home in Uxbridge, west London, that was about to be demolished.
Taking a deep breath, she put in a bid. Her husband Sean left his job at Thames Water in order to access redundancy pay to put towards the costs and Anna worked evenings on a phone switchboard until 2am to make ends meet.
Meanwhile, she spent her days contacting local businesses for donations and approached the probation service for volunteers. Another appeal resulted in dozens of local carpenters, electricians and painters turning out to work for free.
Fast forward 25 years and Anna’s drive to establish Hillingdon Manor School – now one of the largest schools of its kind for autistic children in Europe – has led her to become one of the most lauded autism campaigners in the country. In 2009, she established her own autism charity,Anna Kennedy Online, and in 2012, she was awarded an OBE by the late Queen Elizabeth II.
ANNA was also praised by Amnesty International in recognition of her pioneering support for children with autism. It’s a remarkable achievement for someone who, by her own admission, knew nothing of the condition, other than having seen Dustin Hoffman’s portrayal of an autistic man in the award-winning 1988 film Rain Man.
“So, it was a big learning curve,” she smiles.
A lifelong developmental condition, autism affects how people communicate and interact with the world. Autistic people may find it hard to understand how others think or feel, often becoming anxious about unfamiliar situations and finding it difficult to socialise.
They can also experience meltdowns from sensory overload, caused by loud noises or crowds; they take comfort in familiar routines.
Today Anna, 64, is proud of the way her eldest son Patrick has forged his way in the world, despite his autism. The 34-year-old has his own flat and works at Pinewood Studios in the health and safety department.
“He’s been there for five years and he’s doing really well,” she says proudly.
“He’s passionate about palaeontology and he’s known as Paleo Pat because of his knowledge. He’s got other people interested in it as well.”
She says Patrick’s colleagues are very accommodating. If, for example, he needs a break from the pressure of work, he simply heads off for a quick walk around the studio site. Anna’s youngest son Angelo, 31, still lives at home. “He’s severely autistic with minimal verbal skills and he has quite major sensory difficulties,” Anna explains.
“I do worry about him, because he’s a vulnerable young man. He’s going to need oneto-one support for the rest of his life and you read so many horror stories about adults being abused or bullied in care homes.”
Anna survives on just three to four hours of shut eye at the moment. “Angelo is a really poor sleeper, so sometimes I can’t go to bed until around 2am – he has no sense of danger so I have to be awake when he’s awake,” she explains. “He gets up early and plays DVDs over and over again – at the minute it’s The
Lion King. I know I’m not going to be able to look after him for the rest of my life, so I do worry.”
These concerns led her to launch a new campaign and she recently took a 17,000signature petition to Social Care Minister Helen Whately at Downing Street. It highlighted how parents of dependent autistic adults are worried about who will look after their children when they are no longer around.
Last year, Anna and her husband Sean worked with the Metropolitan Police, publishing a report which provides advice for officers on how to stop and search people with autism. The guidance explains what autism is and how people on the spectrum are likely to react to being approached. It has since been shared with police forces around the country.
Meanwhile, Anna runs annual fundraising events, including Autism’s Got Talent, which showcases gifted autistic youngsters.
Her devotion to her charity and her family leaves her little time for herself. She recently treated herself to a head and shoulder massage – the first massage she’s ever had. When the family went for a long weekend in Bath recently, it was their first holiday for 20 years.
“I’m a bit of a workaholic and I don’t want other families to encounter the same difficulties of navigating the system we did,” she admits. “I look after myself as best I can, but I do get a lot of headaches.
“My sister tells me to slow down and reminds me that I can’t be there for everyone. But I can’t help it.” After speaking to the Express, she was due to head off to Leeds to visit a young woman she mentors.The week before, she was at Watford Football Club for a family fundraiser.
“I still get really excited before the fundraising events and then I’m on a high and I can’t sleep for days afterwards,” she says.
“Once that fire inside goes out, then that is the time to stop. But at the moment it’s always there.”
‘I don’t want other families to encounter the same difficulties navigating the system we did’