Here's a DS story you don't hear everyday.....

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http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2008/09/22/hdowns122.xml

Down's syndrome: Notes on a Scandal star Max in a drama that never ends Last Updated: 12:01am BST 22/09/2008 He

is a successful actor, but his Down's syndrome has led to battles with

doctors, teachers and councils. Max and his mum Sandy talk to

Cassandra Jardine Snogging is 15-year-old Max

's favourite pastime. Fortunately for him, his mother Sandy is a

liberal type. "We let him have supper parties," she says. "I put out

the food and drink and give them a bell to ring if they need something.

I always knock before I enter." Max and his mum Sandy: 'Most children were kind, but Max

doesn't want kindness, he

wants mates'Despite his tender age, Max is already on to his sixth girlfriend and it sounds as if his eye is roving yet again."I

might grow out of Hannah when I'm older," he says, curled up on a sofa

at the family home in Finchley, north London. "I'm always trying to

find a blonde girl like Mum. And dumped me."Most teenagers would rather die than make such uncool admissions, but Max is unusual. He

has Down's syndrome, a chromosomal abnormality with a host of physical

and mental problems - but these pale before the insensitive treatment

he has encountered. "I hate it when people look at me all the time," he

says. "They think I'm stupid and can't do anything."advertisementCompared

with other people with Down's, Sandy says, Max is not particularly

gifted. His IQ is well below 100. "Academic" stuff he finds very hard -

though he managed to disguise his poor reading for years by learning

his favourite books off by heart.But there is

something special about Max: he has a passion, and a talent, for

acting. At his acting group, Chickenshed, he made such a mark that he

was cast as Cate Blanchett and Bill Nighy's child in the 2006

-nominated film Notes on a Scandal. His

favourite line, "Up your bum", was cut, he says - perhaps because he

proved such a scene-stealer - but there was enough left of his gleeful

dancing, eating and chatting on screen to land him a part in Lynda

LaPlante's police drama Trial and Retribution, and for him to be

interviewed on Breakfast TV. His fame has now landed him a new role as

a poster boy for disability.This month the

charity National Children's Homes (NCH) is relaunching itself under the

new name Action for Children (AFC) and Max has become one of its

celebrity spokesmen. Chief executive Clare

Tickell explains that the change of the 140-year-old name was necessary

because the charity no longer provides homes for children, but aims to

give a voice to children who are vulnerable, either because their

parents can't look after them or because - as in Max's case - they have

a disability."We must find ways of letting them

feel we are hearing what they have to say," Clare Tickell says. "Max is

remarkable because of the courage and tenacity he shows, despite the

challenges he has had to face."Some of those

challenges were physical. Max was born with club feet, which have been

remedied, and a hole in the heart that may require an operation. His

condition also means he has a tendency to poor muscle tone, which makes

it difficult for him to walk further than the corner shop, and a low

metabolism so he tends to put on weight. The latter is a big issue, as

food is his second greatest pleasure in life after performing.But many other obstacles have been put in Max's and his parents' way. From

the moment her son was born in March 1993, Sandy has had to put up with

crass behaviour from doctors, teachers, classmates' parents and

erstwhile friends who, she says, didn't seem to realise that Max is a

complete human being, not a misfortune. Instead of pity or ostracism,

she wants support and understanding.The long

struggle for help placed a strain on the whole family. Bottled-up rage

and frustration led Sandy, who has recently written a book about life

with Max, to suffer bouts of depression.She gave

up work to care for him and her husband , who used to work in

marketing for Warner Brothers, had to go freelance to ensure enough

flexibility in his hours. For 15 years they have

had no respite care. "Even now we can never go out with our younger

son, Charlie [who's 12], for more than a few minutes because Max can't

walk, won't sit in a wheelchair and won't be left alone," says Sandy.

"It has never been possible to go to the playground or for a walk in

the woods."Max also has phobias of dogs, clowns

and metal detectors," she adds. "He is usually continent, but if he

gets excited he can have accidents. And he says what comes into his

head. When we went on a family holiday to Dubai

he addressed all the men in Arab dress as 'shepherds', because they

reminded him of his school nativity play. Charlie has always suffered

from Max being the centre of attention - and sometimes he can be really

embarrassing."Added to that are the battles with

authority that are the lot of a parent with a disabled child. "When

Max's special needs were assessed," Sandy says, "speech therapy was

described as a fundamental necessity. Although

the borough was obliged to provide it, he got none. We had to pay for

it ourselves and take Barnet [Council] to court, which cost thousands."Then

there are the constant changes of policy that make it hard to know what

kind of help or education is available for a disabled child. Action for

Children has totted up the changes over the past 21 years (the notional

childhood of a disabled child). "Even we were

surprised by what we found," says Clare Tickell. "There have been 98

Acts of Parliament, 82 different strategies, 77 initiatives and 50 new

funding streams affecting children's services during that time. I'm

not saying that they aren't well-intentioned, but the culture of

uncertainty does not help vulnerable children. They and their parents

need consistency and reliability."Max is one of

those who has suffered from changes in education policy. In line with

past ideas about inclusion, he originally started in a mainstream

school. But as the educational and social gap between him and his

classmates widened, problems developed."Parents

complained that he was holding their children back," says Sandy. "Most

children were kind, but they never invited him round to tea. Max

doesn't want kindness, he wants mates." He then

moved to a special school - but that was not the end of the story.

"There, because all kinds of difficulties are lumped together, he was

put beside a child of normal intelligence who was violent. Max was

picking up that behaviour."Sandy can talk

calmly now about such problems largely because she has offloaded her 15

years of hurt and irritation into her book. "My anger has evaporated,"

she says, but the family's battles are not over yet. They want to find

Max a college course in theatre studies.One day he will also need a safe place where he can live independently. And, of course, entertain his girlfriends.• www.actionforchildren.org.uk•'Living

with Max' by Sandy (Vermilion) is available from Telegraph Books

for £11.99 + £1.25 p & p. To order, call 0 or go to www.books.telegraph.co.ukCarol in ILMom to , 8 DS My problem is not how I look. It's how you see me.VOTE NOBAMA '08Join our Down Syndrome information group - http://health. groups.yahoo. com/group/ DownSyndromeInfo Exchange/ Listen to oldest dd's music http://www.myspace. com/vennamusic