We adopted four children - then discovered they were autistic

by Helen Weathers
Last updated at 08:14 15 February 2007

Four autistic children, their utterly devoted adoptive parents and a truly inspiring story of love and sacrifice:

The faces of hundreds of children stared back at Sandy and Robin Row from the photographs contained in the inch-thick adoption agency book.

Page after page of them, all with faces scrubbed and hair neatly brushed, trying to look their best in the hope of being chosen. But the picture the Rows kept returning to, the one that touched them most, was of four siblings sitting next to each other on a sofa: six-year-old Alice; Alex, five; Richard, three; and two-year-old Jack.

'They were all lined up with their little legs hanging over the edge of the cushions,' remembers Sandy, 52. 'The photograph had been taken at an angle, which made their feet look absolutely enormous and made us laugh through our tears.

'All the pictures in the agency's book were heartbreaking, with each child seeming to be asking us: "Will you be my new mummy and daddy?" ? but there was just something about these four.

Alice was wearing a very anxious expression - she still does to this day - but the boys were smiling. Like all children, they looked very cute and mischievous.

'We turned to each other and said: "Four children? We've got to be having a laugh." We'd never intended to adopt such a large family, but once we'd seen them, that was it.

'We were thrilled when we were accepted as their adoptive parents. Really, though, we had no idea what we were letting ourselves in for.'

What they let themselves in for, 16 years ago, were four children who'd been taken into care after being neglected by their birth parents and who suffered from varying degrees of developmental, speech and language delay.

The Rows thought they'd be able to cope, but there were many times when they admit they couldn't. They were unaware that the children's problems were far more extensive than either they or the adoption agency had realised.

It would be ten years of violent tantrums and uncontrollable behaviour before Alice, the eldest, was properly diagnosed as suffering from an autistic spectrum disorder. They subsequently discovered that her three brothers also had Asperger's syndrome and other associated disorders, including dyslexia, dyspraxia, auditory processing disorder and attention deficit hyperactivity disorder.

Believed to affect one in every 110 people, these genetically inherited disorders affected the children's ability to communicate, process information, interact socially, learn, write and physically co-ordinate their movements.

'Had we known then all the problems and stress we would face, I doubt we would have gone ahead, because we wouldn't have considered ourselves equipped to deal with the challenges they presented,' says Sandy.

'But we didn't know, and despite the mistakes we've made and the tears we've cried, we love them all to bits.

'We never felt that the adoption agency kept anything from us about the children, because back then techniques for diagnosing autism weren't so sophisticated. But what did make us angry was how hard it was to get the right help for them once they had been properly diagnosed.'

There have been many times during the past 16 years when the Rows' overwhelming desire to become parents has taken them to the brink of despair and placed their 29-year marriage under intolerable strain.

However, their story is not one of failure. It is rather the uplifting and inspirational odyssey of one couple who, despite feeling hopelessly out of their depth, refused to give up on their troubled children, fighting the authorities tooth and nail to recognise their special needs and provide them places in specialist colleges.

It was, Sandy wryly comments, like being armed with a pea-shooter against a tank.

Sandy, who was left unable to conceive naturally after two ectopic pregnancies in her 20s, considers her greatest achievement as a mother is the fact that all four are now happily settled in special needs colleges or communities that can properly support them as they move into adulthood.

Alice, now 22, has graduated from college to a special needs community for adults with social difficulties, where she is developing her talents as a weaver. Alex, 21, is in another, busier community and is captain of the swimming, football and water polo teams.

Richard, 20, an accomplished potter and basket-maker, is at a special needs college in Gloucestershire, while the youngest, 18-year-old Jack, is at a sister college in the Midlands.

'All the children are much calmer and happier now,' says Sandy, who together with her husband runs a holiday business in Wales. 'They will never be able to live on their own unsupported, but at least after we've gone we know they will be safe and their lives will go on uninterrupted.'

This achievement is far greater than it at first appears. With the closure of special schools and the Government's commitment to an 'inclusion policy' - keeping special needs children in mainstream schools - many vulnerable youngsters are suffering and face uncertain futures.

With that in mind, Sandy has written a book to help guide other parents through the Special Educational Needs System. She says looking back at their own traumatic experience has, in fact, been cathartic.

The Rows were married in 1976 and looked forward to having a family, but after those two ectopic pregnancies left Sandy unable to conceive, they spent £12,000 on six failed cycles of IVF and started thinking about adoption.

By now aged 35 and 36, they were told they were too old to adopt a baby, but social services considered they might still be suitable for toddlers.

After five months of stringent vetting, they were finally approved - by which time they'd set their hearts on the four siblings they'd seen in the adoption agency book.

The Rows first saw the photograph of their future family in February 1990. They met the children shortly after being approved by social services as adoptive parents in April of that year, and brought them home in July.

'It all happened very quickly,' says Sandy. 'And although there were times when we felt very scared and frightened by the enormity of the task ahead of us, we never thought twice about adopting these children.

'I remember telling my GP about our plans to adopt before we'd even seen that photograph, and she said to me: "You'd better become an expert in tough love." At the time, I had no idea what she meant, but I do now. At the start, we were blindly optimistic.

'First they sent us a video of the children, and as we watched them on camera we just thought "Yes!"

'The social worker cried when we told her we wanted to go to the next step, because apparently we were the first people to do so. Others had been put off by their speech and developmental delay - but all we could see were four lovely children who needed a new mummy and daddy.

'When we saw them for the first time, I felt so emotional. We went to see them on a "blind viewing", watching them play in a park as we sat on a bench nearby, pretending we were bystanders. I couldn't take my eyes off them as they played together, the older children helping the younger ones.'

Their first meeting at the children's foster parents' home only reinforced their determination.

'The two youngest met us at the door with huge smiles,' says Sandy. 'We had to wait for the two older children to return from school. I will never forget Alice coming up to me, sitting at my feet and asking: "Do you really want all four of us?" That melted my heart.

'Although we'd been warned that they wouldn't call us Mum and Dad to start with, I remember the joy I felt when, after a few weeks, on one of our outings before the adoption went through, Alice called me "Mummy".

'Robin and I looked at each other with tears in our eyes. It was a word we'd both been waiting to hear but had come to believe we never would.'

And so in July 1990, the Rows collected the children from their foster home and brought them back to their rambling farmhouse, where freshly-painted bedrooms, new bunk beds and a cuddly toy awaited each child.

At first they seemed to settle in well, although Sandy noticed that all the children seemed to need a very structured life, with set meal and bath times. Without that, they would become easily upset and disruptive.

This, she says, is a classic symptom of the autistic child, although she didn't realise it at the time.

It was Alex who initially presented the most obvious problems. With glue ear and a soft palette, he was only able to grunt. The Rows took him to doctors and speech therapists, believing that once these were corrected he would return to normal.

When the children started going to primary school, it became clear that it was not going to be all plain sailing. The siblings found it difficult to make friends, failed to thrive and became increasingly moody and uncontrollable. Sandy decided to take them out of school and teach them to read and write herself.

'We put their problems down to the huge life change they had gone through, and every doctor and psychologist we took them to told us they were simply adjusting to the adoption. One psychologist even told me: "Alice is uncontrollable because you're a bad mother."

'After that terrible accusation, I left the consulting room shaking like a leaf. To be told that, when you are struggling and desperate to help your child, is devastating.

'I felt continually exhausted and drained by Alice's constant tantrums. One terrible day, when she was 11, she screamed all the way down the High Street and back again, lashing out at us and her brothers. Often, I couldn't leave her alone with them for fear that she might harm them.

'Another time, we were quietly baking cakes in the kitchen and I was thinking what a pleasant, peaceful, "normal" time we were having when she suddenly started screaming abuse at me and threw a chair.

'Sometimes it felt as if she hated me and couldn't bear to be in the same room as me, her moods were so black. The vitriol started the moment she woke up and went on until she went to bed. I remember staying in bed for hours one Christmas Eve because I couldn't face it.'

Seeing how unhappy and troubled their daughter was, and with Sandy on the brink of a nervous breakdown, the Rows decided to pay, with the help of a philanthropic trust, for Alice to go to a Rudolf Steiner boarding school - one of a series of special schools where children are nurtured with particular care.

It was the school that first suggested to the Rows that Alice might be suffering from autism.

At the age of 16 she was finally diagnosed. After a battle with the local education authority, the Rows secured funding for her to attend a residential specialist college. Such places can cost LEAs around £70,000 a year for each child.

'Often, with autistic children, the problems really come to the fore when they start to reach adolescence - and that is what happened with each of the boys,' says Sandy.

'They were all very frustrated and unhappy in their mainstream school.

A doctor explained to me that for autistic children, who have difficulty processing auditory sounds, it's like going to a school where everyone speaks German except them.

'When a teacher asks a question, they can't cope because they are still trying to process the previous instruction. Their brains become completely overloaded and they can't cope.

'When I used to pick them up from school, they would take all their frustration out on me, screaming and shouting. A doctor told me that it was, in a way, a compliment because I was the only person they felt safe enough to do that with. But it didn't feel like that at the time.

'Once, one of the boys tried to grab the steering wheel as I was driving him to school because he didn't want to go. In tears, I took him to my social worker and said: "I just don't know what to do."'

With each of the children, it was a battle to get the right diagnosis, and then an even greater one to get them help. By 2002, the Rows had successfully found special needs provision for three of their children, though not without a struggle.

'After Richard, our middle son, was diagnosed, it took more than two years to win funding for a special needs school,' says Sandy. 'The education authority just would not agree with the diagnosis.

'During this time, he became very distressed and violent, stamping so hard on my big toe during one tantrum that the nail eventually fell off, and biting a hole in his own face through his lip. That battle nearly finished us off, but eventually we won.'

Meanwhile, for their youngest, Jack, the problems were just beginning. 'Jack had been a delightful, loving child who'd taken the brunt of his siblings' problems by giving up his toys or favourite yoghurt to the older ones to avoid tantrums,' says Sandy.

'He seemed such a bright, curious child. 'But he used his intellect well to mask his problems, which only surfaced when he cracked under the pressure of facing his GCSEs. At 16, he became suicidal and started to self-harm, digging holes in his body with the point of a compass.'

Now he is thriving in a residential college and the Rows' home is again calm as they reclaim their marriage and rebuild their own emotional strength.

'I don't know how we managed to survive as a couple, but I put it down to our deep friendship and our shared sense of humour,' says Sandy.

'We've been to hell and back, but amazingly our love for each other has survived. We both feel as if the worst is behind us. We know the children are happy and calm. When my social worker read my book, she told me she'd cried. She said she thought she'd done the wrong thing because of all the problems we'd faced. But then she'd thought "No, I absolutely did the right thing" because we'd fought for our kids.

'We didn't give up on them. Knowing what I do now, I could never blame anyone who does give up. But how could I reject them when they'd faced so much rejection in the past?

'Only recently, Alice was talking to her grandparents and said: "I don't know how Mum and Dad put up with me." But we had no choice because they were our kids. We owed them our best.

'This Christmas, they all came home to see us and we went to a family party. It was so wonderful seeing them all together again, but so calm and happy. When I look at one of them, I never think "That's my autistic, adopted son". I simply think: "That's my son." I'm so proud of them all.'

Surviving The Special Educational Needs System: How To Be A Velvet Bulldozer by Sandy Row, Jessica Kingsley Publishers, £12.95 (www.special-educational-needs.co.uk)

ADDITIONAL REPORTING: ANTHEA GERRIE

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