Down but by no means out

Yet the last thing they want, says Sandy, is to disrupt the hard-earned routine of Max's daily life at home in Finchley, and that of his "normal" brother Charlie, younger by two years.

"You can't be blasé about the fact that the first film he appears in stars Cate Blanchett and Judi Dench, and is nominated for an Oscar. But he is just a child, and his brother is, too.

"I still look at Max sometimes and think how he wakes up in the morning with all these disadvantages before he even gets out of bed.

"Yet he manages to accomplish so much. He did the red-carpet thing at the London premiere for the film the other day, and I watched him and thought, 'Hold on a minute, but he finds it difficult to string a sentence together!'

"None of the family are theatrical, we're all shy little bookworms, so for him to blossom as an actor still seems incredible."

It was while Sandy was looking after Max on the set of Notes on a Scandal, last summer in Hampstead, that she began to compose in her head the beginnings of a book she has written about her son and the pressures of living with Down's syndrome.

"I got to thinking about the day he was born, which was unquestionably the worst and the best day of my life, and how we'd somehow got to the point that we were sitting down having lunch with Cate Blanchett," she says.

She found the writing hugely cathartic. "As I was doing it, I'd say to Paul and to friends, 'Oh, I hate this, I'm not having any fun doing it,' but then, bizarrely, the anger I'd been dragging around for over a decade just evaporated. And it remains a distant memory."

The anger, it almost goes without saying, sprang primarily from the grief she first felt at her son's disability, though it also has its roots, she says, in other people's attitudes towards him.

She was just 29 when she had Max, and had suffered a miscarriage before him. "I didn't have the tests you can have while I was pregnant with Max. I just said 'I'm not letting go of this one, I don't care if he's green with purple spots.'"

Yet, towards the end of her pregnancy, she began to suspect, with an inexplicable intuition, that her baby had Down's syndrome.

Coming across a radio programme about the condition one day, she suddenly felt a chill sweep over her and had to switch it off.

"He wasn't kicking or moving very much, not how other mothers described it anyway. Towards the end, I just knew. It felt like my world had collapsed when he was born and we were told that he probably did have Down's.

"It stays with you for a long time, that feeling, for months and months. I remember feeling completely overwhelmed with grief."

An unbelievably callous nurse in the maternity unit at St Mary's Hospital, Paddington, compounded that anguish by suggesting Sandy's best course was to abandon her baby.

She paraphrases the advice: "Put him in a home, go on holiday, come back and have the baby you want. Your husband will leave you if you don't."

"Oh, and I've spoken to many mothers of Down's-syndrome babies who've been told the same thing," she says.

In Notes on a Scandal, the teacher played by Blanchett has an illegal affair with a 15-year-old boy pupil.

There's a heavy implication that, though her character is weak-willed, she partly takes up with the boy as a means of escaping the pressure of bringing up a Down's-syndrome child.

Essentially, she feels trapped by him. "I can identify with that," says Sandy. "Yes, I do see her madness."

At the same time, she insists, life with Max is extraordinarily rewarding. "He has really stopped my husband and I in our tracks.

"There have been moments of hideous pain. He was born with a hole in his heart, too, as many Down's children are, and there've been times when we've never really known if he would survive.

"We've spent nights praying he won't be taken from us. But he has taught the family huge lessons: about not judging someone by what you see, about appreciating the smaller things.

"I don't want to sound drippy, but he really does teach you something about your soul. Every time I look at him, I think: 'Crikey, aren't you lovely.'

"He's a fantastic barometer, too, in terms of other people. You quickly work out who has the tolerance to just give him a little bit more understanding, and who hasn't."

Like many parents of children with special needs - unless you happen to be a former Education Secretary who can afford to go private - the Lewises have had to fight for appropriate educational provision, in their case from Barnet.

At first, remarkably, an educational psychologist advised the family not to obtain for Max a statement of special educational needs, and to send him to a mainstream primary school with no additional support.

The Lewises demanded a statement and then spent £5,000 bringing a case to tribunal to obtain for Max "sufficient speech therapy and non-teaching support". He now goes to a special-needs school, where he loves dancing and cooking.

But Max's "lifesaver", as Paul describes it, has been the Chickenshed theatre company. "It's the only place he's found where he's truly equal," he says. "Where he's not different, either because he can't do what other people can, or because he has support that other people don't."

Chickenshed's unconditionally inclusive artistic policy means that everyone - the able-bodied, the disabled, special-needs children, kids from every class and background - acts, works and performs together. And not just in small, tailor-made shows: Chickenshed stages full-scale productions of more than 250 children.

It has put on shows in the West End, at the Royal Albert Hall and at 10 Downing Street. There are 600 kids in its Children's and Youth Theatre (with a 2,500-strong waiting list) and a further 110 on the BTec national diploma and foundation degree courses: of the 33 who graduated last year, 18 came to the company with statements of special educational needs, or with truancy records. A full 98 per cent got their certificate.

Chickenshed, indeed, has become something of a phenomenon in London. Without state funding - there is no Arts Council grant - it has set up 20 small outposts across the city, and sends teachers into some of the most deprived inner-London schools to work with the toughest kids.

When he's 16 and has finished school, Max Lewis, too, hopes to take the BTec course and become a full-time actor.

His CV so far looks pretty impressive. Later this month he appears in ITV's Trial and Retribution XIII as a police witness named Miles Deacon, a part not specifically written for a Down's-syndrome child, but - as Sandy says - simply "for a boy with lots of talent".

He would love to be in a James Bond movie, he says. When I ask him about the premiere of Notes on a Scandal and how he felt tripping down the red carpet, he tells me in some detail about the after-screening party and how good the crisps were. He is, clearly, loving every minute of it - and wouldn't anyone?

I wonder which actor he would most like to star alongside. Max thinks, then sits up straight, eyes alight: "Cate Blanchett," he says softly, grinning. "Cate again."

Notes on a Scandal is on general release. www.chickenshed.org.uk