We adopted four children - then discovered they were autistic

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We adopted four children - then discovered they were autistic

by Helen Weathers

Last updated at 09:31am on 14th 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; , five; , 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. , 21, is in another, busier

community and is captain of the swimming, football and water polo

teams.

, 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 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 , 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, Kingsley Publishers, £12.95

(www.special-educational-needs.co.uk)

ADDITIONAL REPORTING: ANTHEA GERRIE