Among many other sacrifices, it will mean remortgaging her home. But Anna Kennedy (pictured right) is determined that autistic children, including her own boys, should get the education they deserve. Reva Klein reports.
To say Anna Kennedy has her hands full is an understatement. Her six-year-old, Angelo, sleeps only three hours a night. She is awake with him the rest of the time. All night, every night.
When he isn't looking at books or playing with toys, he runs around, sometimes seemingly up the walls, squealing with delight or frustration.
At bathtime the sounds are different: he screams as if he's being murdered. He is terrified of water. Rainy days, needless to say, aren't easy.
Her elder son, nine-year-old Patrick, spends most of his time asking questions. Within minutes of meeting me he has fired off a barrage of them regarding my accent. When I explain that American pronunciation is different from British, he has me run through at least 10 words to check if my "speech impediment" is consistent.
He is a formidably bright boy, and a literalist. This can mean dicing with death. Twice Anna has saved his life when he's run out into the road because, as he later explained, she'd never warned him about motorbikes - just cars.
Angelo is not without his dramas either. His father, Sean, once discovered him happily jumping up and down on the roof of the house after climbing out of his bedroom window.
Patrick and Angelo are both autistic, but at opposite ends of the wide autistic spectrum. While the connection between their conditions is not fully understood, doctors agree there is probably a genetic factor, although there is no history of autism in either parent's families.
Patrick has Asperger syndrome, which means that while he has no learning disabilities, he has difficulty with social relationships and with interpreting what's going on around him. Angelo has classic autism, a far more disabling condition that is often accompanied by learning disabilities. Both boys need constant supervision.
Patrick and Angelo are not the only demands on their mother's time these days. All being well, Anna, a former dance teacher, and Sean, a computer programmer, will open the doors of their own school in September. Moorcroft Manor in the London borough of Hillingdon will be an independent school for autistic children who, like the Kennedys, are not having their needs met by their education authority. It will eventually cater for 62 children aged four to 18 in what is now a disused, purpose-built special needs school owned by Hillingdon.
The council is letting the premises rent-free to the Kennedys and their management committee for five years on the proviso that they carry out more than pound;600,000 worth of refurbishment on the building within that time. With the backing of Barclays Bank and other corporate donations, and with the remortgaging of their small semi in Uxbridge, west London - plus the donation of masses of old but usable school furniture from neighbouring schools - they look set to do just that. Plus, there's pound;20,000 from the Hillingdon autistic Care and Support Group set up by Anna.
The school will charge pound;27,000 a year per child, which is pound;2,000 more than Hillingdon's average allocation for an out-of-borough special school placement. (For placements within the borough, it is between pound;8,000 and pound;11,000). The school's management committee maintains that the higher fee reflects the high teacherpupil ratio of one qualified teacher and two assistant teachers for every seven pupils. The school will follow the highly visual Teacch Method for autistic children, pioneered in North Carolina. This involves individualised education programmes for each child, continuous and ongoing assessment and a focus on building up self-esteem. Speech and language therapists will be based at the school.
The committee is advertising for a headteacher who is an autism specialist and it is about to embark on the four-stage Department for Education registration process. It will also be seeking National Autistic Society accreditation.
The Kennedys didn't take up this challenge lightly. According to Anna, it was born of necessity. "We'd been to 26 other schools, mostly in Hillingdon and a few others within an hour's drive of our house. We were turned away by nearly three-quarters because we weren't in their catchment area. Others simply had no places available. And a couple of schools in the borough told me Angelo wasn't suitable: at one, he was considered too advanced and at the other, not advanced enough."
Hillingdon refutes this. Mary Milne, head of client services for health, education and youth, maintains that the Kennedys were offered many placements but found none of them suited their children's needs, which, she admits, are "highly specific".
"We make provision to meet a range of needs for children with autism but the Kennedy children don't easily fit into any of the categories that we cater for."
Both boys had been in mainstream schools. Patrick had started at nursery aged three-and-a-half and was statemented at age five, when he was misleadingly diagnosed as having emotional and behavioural difficulties.
He was given one-to-one support, but it was not, say the Kennedys, the specialist help he needed. "He had trouble understanding what was going on around him because he takes everything literally," says Anna. "So when the teacher would tell the class as a whole to sit down, Patrick wouldn't because she didn't say 'Patrick and the class, sit down'."
He became more and more anxious and distraught at the prospect of going to school. "He'd kick and scream every morning and caused two car accidents on the way to school when he pulled up the handbrake because he didn't want to go. When he came home he'd ask things like 'Mummy, what does brain damage mean? What's a bird brain?' He'd sob and said the ground was swallowing him up and eyes in the wall were looking at him."
When he was nearly eight, his teacher said things couldn't continue as they were. The Kennedys took him for a second assessment, which led to an accurate diagnosis and their unsuccessful quest to find another school.
After Angelo's year in a mainstream nursery, the Kennedys felt it couldn't cater for his needs, although he enjoyed being integrated with other children.
Both boys have been receiving home tuition from the LEA since last April. The time was recently increased from five hours, the LEA's normal allocation, to 10.
The worst thing, says Anna, was the breakdown in communication between the health authority and Hillingdon education department that led to Patrick's diagnosis of Asperger's being withheld from them for three years. While Hillingdon disagrees on the delay - it says it was 11 months - it has stated its "regret" that the health authority hadn't disclosed the full picture to the education department immediately. With an early diagnosis and early intervention, say the Kennedys, Patrick could have received the support he needed.
Two years ago Anna set up the Hillingdon Autism Care and Support Group and has since met many others for whom the statementing process and search for what is best for their children has been a catalogue of frustrations. Already, the new school has a waiting list of 130 parents from all over west London and one family from Singapore.
The Kennedys and the school's committee are determined to make this school work. Hillingdon is also anxious that they make a go of it. Says Mary Milne: "I salute Anna as a parent who has a passion to see that the highly specific needs of her children are met."
BBC2 is screening an hour-long video diary of Anna in the spring (not yet scheduled) * TRAGEDY OF A WASTED LIFE
Alex and Sally Honeysett are ordinary people who have lived extraordinary lives as a result of their son's undiagnosed Asperger syndrome.
Sean, now 33, has been in and out of mental hospitals for half his life. He is an alcoholic, has assaulted his parents and others, has been in trouble with the police and has made a half a dozen suicide attempts.
His father looks back over a lifetime of mistakes: "Sean was in mainstream schools from eight to 14. We knew that there was something wrong but when we took him to see doctors he was misdiagnosed - twice. The first time, a psychiatrist said it was just 'adolescence'. A few years later, we were told it was a 'personality disorder'. It was only through a care worker that I heard about Asperger syndrome.
"When we got an appointment with a specialist, she said 'I don't know what's been going on here. Your son's life has been wasted.' "With an earlier diagnosis, our son could have lived a normal life since he has the intelligence to cope with work. As it was, he was in psychiatric hospitals for 15 years receiving inappropriate medication.
"There are thousands of people out there being treated like Sean because of ignorance about autism."
Alex and Sally are members of the Hillingdon Autistic Care and Support Group and Alex is taking early retirement to take on the full-time post as project manager at Moorcroft Manor School .
* WHAT IS AUTISM?
What is autism? The National Autistic Society defines it as: "a lifelong developmental disability that affects the way a person communicates and relates to people around them. Children and adults with autism are unable to relate to others in a meaningful way. Their ability to develop friendships is impaired as is their capacity to understand other people's feelings."
An adult with autism describes it like this: "Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds and sights. There seem to be no clear boundaries, order or meaning to anything. A large part of my life is spent just trying to work out the pattern behind everything."
New research previewed last week (TES February 5 ) suggests that children's in- ability to engage in imaginative pretend play, which was previously a chief indicator of autism, can change given the right kind of teaching.
Autism covers a wide spectrum of conditions, from classic autism, which often includes learning disabilities and total dependency on others, to "high functioning" autism, which means people can lead fully independent lives.
The causes are unknown, but genetic factors are associated and so, too, may be conditions affecting brain development before, during or soon after birth. It is estimated that around 520,000 families in Britain are affected by autism. The gender ratio is four males to one female.
Asperger syndrome causes difficulties with social relationships and communication. Despite sometimes being highly intelligent, sufferers find it hard to interpret non-verbal signs such as facial expressions and may appear impervious to other people.
Often they have obsessive interests or habits and appear to be dominated by routines. Feelings of isolation and depression are common because. although sociable, they find it difficult to make friends and are often teased and bullied.
There are few schools specifically for children with Asperger syndrome. While some children attend mainstream, others go to specialist schools for children with autism or learning disabilities.
It is estimated that 71 in every 10,000 people have Asperger syndrome and other "high-functioning" disorders within the autistic spectrum.
The National Autistic Society supports local authorities in the development of their own specialist services. It organises conferences and training programmes and publishes a range of books. For more information, ring 0171 833 2299