Suffolk: My son with autism. My son the hero

HUMAN nature being resolutely optimistic, we’re raised to believe that parenthood will be all about dimpled smiles, splodgy paintings Blu-Tacked to the fridge and certificates boasting of A* academic success. It’s a shock if it turns out to be far different.

Helen and Andy Childs were thrilled to learn they would become parents – and rocked when there were complications with the delivery of little Philip. Their son was strangled at birth by the umbilical cord and could not breathe for 12 minutes. Medical staff told the couple: “We are afraid he may be seriously damaged.”

Happily, he was taken out of his incubator after four days. Nurses believed that although he’d endured those minutes of strangulation, the air had not left his brain. Mum and dad were soon allowed to take him home.

Philip was a happy baby. Then the time came for his injections, including one for whooping cough. Within days, his father says, the chuckles disappeared and he seemed to have attacks that left him crying until he was in a state of exhaustion.

It was later discovered he’d been convulsing; having fits. His first Boxing Day saw a severe one.

Philip spent six weeks in a London hospital for assessment; his parents feeling helpless. They learned their son’s brain was damaged and he was likely to be severely mentally handicapped.

“How do you cope with a statement of fact like that?” Andy writes in a book telling the story of his son from birth in the mid 1960s.

“Life can be oh so cruel and it does make one wonder if there really is a God in heaven. If there were, I thought to myself, why would he let such things happen?”

They’d discover later that Philip was autistic. Although he’s grown up to have a degree of independence, he’s always needed fairly close supervision.

There have very dark times, as his condition sometimes made him violent, but there have been many great days, too. He became a passionate cyclist, more than once pedalling with his dad between John O’Groats and Land’s End. He’s rubbed shoulders with The Princess Royal. He’s won a trophy previously held by Ian Botham and is the only person to have won it twice. Philip’s been invited to tea with Griff Rhys Jones . . . and to the Queen’s garden party.

Former bank manager Andy, who lives near Woodbridge, has spent four years putting the story together. Any profits from sales of the book, after recovering his costs, will go to the charity Hft, which helps people with learning disabilities and their families.

Philip has been in its care for 26 years and his father admits “I do sometimes wonder if without them I would be alive today.”

Worrying about their son has indeed been a massive strain for the Childs. Andy tells the EADT the idea of a book had lain dormant until “the last period of despair, which was more intense than anything that had gone before.

“Within that despair I realised, helpless as we felt, we were not alone with our problems and that there were two sides to Philip’s life: the good times and the helpless times.

“This made me think that if I could successfully get the story into a realistic perspective, it could be a tool to help others with their problems and their offspring with a learning disability. It would show ‘You’re Not Alone’ with those problems.”

When baby Philip was discharged from that London hospital, the doctor said: “His future is not bright. There is little comfort or hope I can offer. What can be made of Philip is up to you both.”

At home, nights were long and tortuous. The couple decided to take it in turns to attend to their son, alternating nights, but inevitably both were disturbed and sleep was hard to come by.

There was some relief when they were contacted by an osteopath and cranial treatment expert called Leslie Barker who lived at Martlesham, near Woodbridge, and had learned of Philip via Helen’s parents.

Mr Barker proved to be a guardian angle, says Andy, by quietly working on the boy’s head. “Philip continued to fit but on a reduced basis shortly after the first and subsequent treatments,” says Andy.

He learned to walk – each new milestone a cause for celebration. Physically, the lad was doing fine, but mentally he was making slow progress. “Philip’s speech was virtually non-existent, and what there was was very monotone and repetitive.”

He became a happy two-year-old, though – busying himself in his sand pit and playing with his red wheelbarrow. Sister Alice was born in 1969 and, when he was nearly four, Philip went to nursery school, though he didn’t often play with the other children.

Andy’s career with Lloyds Bank had taken him from Luton to Cambridgeshire and in the spring of 1970 he was made assistant manager at High Wycombe.

The Childs were distraught that their son was offered a place at a school for the severely sub-normal, as they were called in those days, but in hindsight realised it was the right place.

At home, Philip and Alice played happily – mostly – and the lad began to read: progressing, with his mum and dad’s help, through the Janet and John series.

He also became an adept cyclist – it would become a serious pastime. – though trips didn’t always run smoothly. Once, he suddenly developed a phobia about passing any shop, and definitely would not go in any that had a doorway blind made of plastic strips or metal chains.

Philip seemed to settle at school and his basic number skills were quite impressive. He could also read simple words.

Helen and Andy came to realise, though, that he would need support for the rest of his life. They learned about an organisation then known as The Home Farm Trust, a charity providing lifelong residential care for the mentally handicapped. An application was lodged for Philip for when he reached the age of 18 – “a heartrending but necessary early decision to make”.

At 14 his ability to communicate through speech was still limited, but he was easy enough to manage “and our lives, whilst blighted by his shortcomings, were still progressing quite serenely”.

Then, “seemingly in a matter of seconds, our world was turned upside down. From this change we have never fully recovered and now know we never will”.

Philip began being bloody minded. “He exhibited a pent-up fury which we had never seen before . . . He was suddenly tense, unco-operative, and gone was the largely happy disposition we had previously enjoyed.”

Was it to do with adolescence kicking in? “No longer could we go out to eat, as embarrassing situations and tantrums would start without warning.”

Andy reveals: “Tensions at home mounted, as, in frustration, Philip banged on windows which broke under the force of his flailing fists, walls in his bedroom were defaced and doors were kicked. Life became hell.”

The mood swings started to disrupt other students. “Not every day was a crisis by any means but a crisis was never far away . . .” At home, he became obsessive about the sheets on his bed not being creased. Crockery and glassware, and milk bottles, were vulnerable. “We always seemed to be paying out for repairs or paint to redecorate.”

It wasn’t all gloom. “Philip thirsted for his cycle rides. This was certainly a way of harnessing his aggression and making him feel independent . . . Out on his bike, he was a model of concentration and good behaviour.”

Philip was also interested in cricket, mainly the statistics. He pored over newspapers, monitoring scores, “and he happily trolled through the ‘hatched’, ‘matched’ and ‘despatched’ columns – no doubt through his continuing fascination with ages, birth-dates and days. A date committed to his memory was never to be forgotten”.

When Philip was 18, father and son took part in the 56-mile British Heart Foundation London to Brighton Cycle Ride – inspired by an item seen on the TV news. “His concentration and application throughout the six hours (was) unwavering,” remembers his proud dad.

Buckinghamshire County Council agreed to support Philip at the Hft residential centre – a lifelong commitment that was not undertaken lightly and for which the family is eternally grateful.

The teenager was one of the first residents of a new home. Things initially went well, but then his behaviour became erratic and grew worse. “At times, anything to hand in his frustration would act as a missile.”

A second London-to-Brighton ride was welcome distraction – the Childs’ effort raising a further �3,623 to add to the previous year’s �4,290.

Meanwhile, a psychiatrist’s investigation said Philip was without doubt autistic – the first time that had been suggested. “The findings upon which the prognosis was based were explained to us. We could quite easily identify with virtually every one.”

Autism was, they learned, a severe mental illness whose sufferers were absorbed in their own minds and imaginations. They had limited ability to communicate with others or create relationships, and found it hard to make sense of their surroundings.

The specialist felt some of Philip’s behaviour, if not all, could be modified if he followed a consistent programme. His life settled into a pattern, generally, of stable, helpful periods and then, for no discernible reason, more outbursts. He’d sometimes take off on his bike, often covering many miles but somehow managing to return safely.

He might break a bottle or flood a bathroom, damage a record player or jostle the night staff – because of his ongoing mental torments that were hard for most people to understand.

Staff, says Andy, never knew if Dr Jeckyl or Mr Hyde would appear.

“To see and hear for ourselves what had been going on was like having a knife thrust into us and turned between the shoulder blades,” says Andy.

“As if it was of any comfort, we were told the violent frustrations appeared to be reserved for the ‘home’ environment and not outside it. He always walked the two miles to get his daily newspaper as a model citizen.”

Cycling was always a safety valve. Father and son did the London to Brighton cycle ride for the third year.

Philip met the Princess Royal, a supporter of Hft, when she visited the centre – and then Andy and Philip embarked on a massive challenge: cycling the 874 miles between Land’s End and John O’Groats. They completed it successfully – the experience celebrating Hft’s 25th birthday, Philip’s 21st and Andy’s 50th.

Philip later presented the sponsorship money on stage at an Hft charity gala at Bristol Hippodrome, handing an over-sized cheque to Richard Baker. It was for a massive �53,590.22.

The feat entitled the pair to become members of the Jogle Association, for those who had travelled between the two places. They attended the annual dinner . . . where the young man was thrilled to scoop the 1987 Eagle Trophy for raising the largest amount of money during an end-to-end trip. By the spring of 1988 Philip had been on the prescribed drug Tegratol for six months, and it appeared to help. “Whilst there were still too many outbursts and broken bottles for our liking, it was recorded that the incidents had lessened both in number and severity.”

He moved from the hurly-burly of the big old Hft house to a flat in a new building. The change suited Philip, a loner who because of his autism didn’t much enjoy company. “Suddenly his aggravated moods had largely evaporated.”

With fewer tensions, Philip became much easier to manage – though even routine tasks such as eating, shaving and changing clothes needed monitoring.

Andy would take early retirement and he and Helen came “home” to East Anglia after nearly 25 years in Buckinghamshire.

The next adventure was another John O’Groats to Lands End ride, in

May 2001 – which made Philip the first person to earn the Eagle Trophy a second time.

Later, the impending redevelopment of the site where he lived caused Philip major anxiety and triggered changes in behaviour: a thrown kettle, leaving taps on, physically abusing staff and so on.

For many months he gave his family the cold shoulder – which was deeply painful for them.

They were dark days – two dark years, really – for all concerned. Happily, a temporary move back into the old house, well away from the building site and separate from other residential sections, helped no end. Later, moving into his revamped accommodation – with its private spaces – helped further. “Gone were the constant agitated moods. Gone, at least for the time being, was the fighting of officialdom. Gone were the uncertainties of our family life,” recalls Andy. He says of his son: “Nobody could have foretold the agonies he’d had to endure – he was very close to going over the edge.”

Today, cycling no longer exerts the same fascination for Philip, though he enjoys long walks.

“In writing this book to catalogue the ups and downs, achievements

and flat spots in Philip’s life, the book’s title is also intended to encapsulate the plight of many thousands of families similarly affected and hopefully to inspire them to both enjoy and cherish the shafts of light and joy as they appear,” says Andy. “Rest assured that you are truly ‘not alone’ during the many ensuing struggles. Life is never a ‘bowl of cherries’; there will always be obstacles along the way.

“The skill is to make the best of one’s lot and to remember that life is not a rehearsal for anything else. We all need to make the most of it!”

Where to buy it

YOU’RE Not Alone is stocked by Grange Farm Shop, Hasketon; post offices in Otley and Woodbridge; Williams Stores in Grundisburgh; Browsers, Woodbridge; Waterstones in Ipswich and Bury St Edmunds; Magpie Books, Felixstowe; via www.onefinedayreading.co.uk

Copies can also be bought by post for �11.50 (including postage) from Hft, 21 Ipswich Road, Woodbridge, IP12 4BS. Cheques should be payable to Hft.

See the potential, not the disability

ACTOR, comedian, author and presenter Griff Rhys Jones, who lives in Suffolk, has written the foreword to You’re Not Alone. He says it’s difficult for most of us to picture how it is to have a child with a learning disability.

A patron of Hft, he writes: “I submit that most of us can barely imagine what it really demands: day after day, week after week, year after year – a lifetime of commitment.

“The achievement of this book is to show that such an experience can be a triumph for everybody. There is no shortage of pain and sadness here, of disappointment, sheer hard slog and remorseless dedication. But, my goodness, this is also a story of achievement, victory and joy.”

Mostly, he says, it’s a record of unstinting love.

“In this book we do not see the disability, we see the ability. We do not witness the handicap, we witness the achievement.”