Sandy Lewis was devastated when she learned her son had Down’s syndrome. But here she tells how Max overcame disability and prejudice to achieve his dream and win a leading role in a new film - alongside Cate Blanchett and Bill Nighy - which is being tipped for Oscar success.On a blisteringly hot September day, Cate Blanchett is on a film set dancing with my 13-year-old son, Max. With her usual elegance and charm, Cate holds his hands and moves her body to the rhythm as the cast and crew cheer and clap. Max loves every minute of it.
Perhaps I shouldn’t be surprised.
For Max, who has Down’s syndrome, life is one big, glorious adventure. Thanks to his passion and talent, he is starring in a new Hollywood film alongside Blanchett, Judi Dench and Bill Nighy, and is ratcheting up a list of parts any actor would kill for.
In truth, Max’s birth in March 1993 was both the worst and the best thing that ever happened to me. I was 29. I’d been married to Paul, a marketing consultant, for three years and thought bad things happened to other people.
But that day, my world changed instantly and irrevocably. Every morning since, I have woken up with a black cloud hanging over me. I have had to battle with penny-pinching bureaucracy and struggle with depression to get the best for my son.
I had always known something was wrong - a mother’s instinct, perhaps.
I remember being at home in North London towards the latter part of my pregnancy listening to the radio. A programme about people with Down’s syndrome began and I had to turn it off. A sickening, anxious feeling seeped through me.
After Max was born, a calm settled over the delivery room. He was quiet - there was no robust wail welcoming the world.
The midwife passed him to me and, as I looked at his beautiful face, I was overwhelmed by two conflicting emotions - love for my new son and a deadening certainty that he had Down’s syndrome.
Paul shared my certainty. But in our eyes he was still gorgeous and we took turns to cuddle him. The staff obviously suspected all was not well and soon after the birth I was moved to a private room rather than a ward.
At about 2.30am, a paediatrician examined Max. He had talipes, commonly known as clubfoot. The doctor remarked on how lovely and pink he was, which she felt was a good sign.
But then she started talking about people with Down’s syndrome being loving and gifted musicians. I could tell she was struggling.
I looked at her and said: ‘Please tell me. Do you think my baby has Down’s syndrome?’
She averted her gaze and paused, nervously shuffling her files. ‘We have to do a blood test to be sure and I do so hope I’m wrong, but yes, I think he has Down’s syndrome.’
I welcomed the honesty but it was like a knife slicing through my precious hopes and dreams.
The doctor had to continue her rounds and left me crying. I knew nothing then about Down’s syndrome and my exhausted brain was flooded with stereotypical images: short, stout people with their tongues protruding from vacant faces, peering from Variety Club buses on their way to some cold, grey, charitable institution.
For the first time I experienced a mother’s steely protective strength. I rang Paul, who had returned home before I received the news, and repeated what the doctor had said.
Despite the probable diagnosis, I told him that I loved our son and that he was part of us now. That’s the way it’s been since: we have both had an unyielding passionate love for Max.
Down’s syndrome is caused by the presence of an extra chromosome in the DNA. One in every 1,000 babies is born with the condition and, although every child has different capabilities, they can all suffer from learning difficulties, heart disease, hearing problems and reduced life expectancy.
These were clinical cold facts to absorb shortly after giving birth to your first baby. I would have to live with the knowledge that I would almost certainly outlive my child.
And it wasn’t long before Paul and I encountered the sort of prejudice that we now know is rife in society. Max, as a frail baby, was finding it difficult to breast-feed and I explained my worries to the nurse on duty. Her reaction knocked me back.
‘Well this is the kind of thing you get with these,’ she snapped. ‘They never feed well. Why don’t you let someone else take care of him?
‘There are places, you know. 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.’
She then promptly left the room. I was mortified.
Her view, and that of many people in the hospital, seemed to be that we had given birth to a monster. In their opinion, Max should have been aborted. Now he would be a drain on society and us.
Thankfully, our friends and family thought differently and flowers began to arrive by the bucket-load. I welcomed them with open arms although, looking back, this reaction was probably over the top as well.
Some of our friends were in total denial, refusing to see Max as anything other than a bright little human being, his presence posing no problem whatsoever to our future lives.
In fact, the first eight months of life with Max were far from easy. He slept a lot and was an extremely good baby, but I struggled to accept the hand fate had dealt me.
There was no glow that first-time mothers enjoy. Instead, depression slowly engulfed me. I never noticed, never even caught a glimpse, until one morning I just couldn’t face the day; I couldn’t even contemplate the thought of showering or washing my hair.
I was on auto-pilot for Max, so I met his needs without question, but I badly neglected my own requirements.
Paul forced me to go to my GP, who, in turn, sent me to see a psychiatrist. She asked me all sorts of ordinary questions about how I was feeling and how my depression had manifested itself, but one question will always stay with me. She asked me if I had ever contemplated suicide.
I hesitated before I replied and I think the psychiatrist took this as dodging the truth.
But I hesitated because I struggled to find the right words to explain myself: to say that suicide is not an option for me, that my son would keep me on this earth unequivocally. His mere existence automatically justifies mine and I would never consider leaving him behind.
In the years since, my black moods have come and gone. Therapy and anti-depressants have helped. But I never let depression get in the way of my care for Max.
What’s more, for every difficulty that Max presents, there is something else he does that fills me with joy.
For example, around the time that I was first diagnosed with depression, when Max was eight months old, I recorded his first smile in my diary: ‘Like some heaven-sent sign or a declaration of a divine promise, something enchanting and wonderful happened today: Max grinned at me; not wind, not my imagination.
‘A beaming smile from cheek to chubby cheek and a sparkle deep from within his adorable twinkling eyes. Since that smile the sunshine has shone and a rainbow is engulfing me in a warm, colourful blanket.’
To this day, Max’s smile is guaranteed to light up a room. He is a charmer, an enthusiast and a huge show-off. He wakes up every morning full of energy, ready to attack the day. Whether we’re going to Legoland or Tesco, he will approach each experience with the same exuberance.
Our other son, Charlie, who was born two years after Max and does not have Down’s syndrome, is shy and sensitive. Max, on the other hand, is boisterous and also a wicked little flirt.
Ever since he was old enough to sit up, he has had an eye for a pretty woman. In restaurants, he always picks out the most attractive waitress and makes sure she gets the full effect of his hundred-megawatt smile.
From then on, we know we’ll get whatever we ask for. Even if it’s something fairly outrageous, Max will say ‘Pretty please’, and it will be done.
Of course, everyday life with Max is hard work. Just as we think we are coping, some new calamity drops on us. There are always the health worries - his immune system is weak and he is vulnerable to serious infections, particularly in the chest.
Like most children with Down’s syndrome, he was born with a hole in his heart, but the doctors say it could repair itself by the time Max is in his mid-teens.
Max can be stubborn, cannot be rushed and reacts badly to change. He has irrational fears, among them clowns and unexpected loud noises.
He is also unable to cope with failure. If something goes wrong (such as him losing a life in a computer game), he becomes quiet and grumpy.
Sometimes he will simply refuse to do what I say. ‘No! I’m not doing that,’ he will announce. Then I know I’m beaten.
It has also been a monumental struggle to ensure he gets the right kind of education.
When Max was six, Paul and I decided we wanted him to go to a normal, mainstream school. But just before he started, we had our first bruising tussle with authority in the shape of the council’s educational psychologist.
I will never forget the meeting. Within five minutes she was telling me how to approach my son’s education, presenting herself as a trustworthy professional.
She recommended that we did not get Max a Statement of Educational Needs. The statement is a contract between the local education authority and the parents of a child with special needs, stipulating exactly what extra support the authority must provide for the child. The psychologist felt that Max was doing well on his own.
I was stunned. She was suggesting he did not require full-time support within his school. Did she really imagine a child with Down’s syndrome could embark upon mainstream school without it? Although she said she had my son’s interests at heart, I think her priority was to save the council money.
We ignored her and insisted he have a statement. I suspect Paul and I were seen as troublemakers from then on. Rightly so. We would cause havoc over the coming years, eventually ending up in a financially draining legal case.
After a year Max had become a well-known fixture at his school. His generosity of spirit won him many friends and his disability taught people tolerance and humility.
But not everyone was happy. Some parents were concerned that Max was holding back their children’s learning and complained to the headteacher.
To her credit, the headteacher politely suggested that if they were unhappy with the situation, instead of whipping up unpleasant feelings, they should take steps to search for a replacement school for their children as soon as possible.
We were extremely grateful to the head for this, and for a while Max seemed to be thriving. But as soon as he started junior school at the age of nine, we noticed a change.
Max and his accompanying baggage could no longer hide quite so easily in a classroom. People were lovely to him, but he didn’t have friends. They just tolerated him when he wanted to join in.
Max was falling further and further behind and becoming more and more alienated from his classmates. He summarised his fears about going to class in a simple, pleading phrase: ‘No school today, Mum.’
Later that year, we finally decided to move him to a special-needs school. It meant another fight with the education authority over funding but we were used to it by now. Our attitude was one of polite but firm commitment, and in the end we prevailed.
It was only when Max moved to this new school that an extraordinary gap in his learning was revealed. Max had fooled us all. He had learned by heart all the books in his reading system, and actually couldn’t read at all. Paul and I were devastated.
Slowly, thanks to his new teachers and a private tutor, Max is now making some headway and enjoying school again.
His first love, however, is acting. He belongs to Chickenshed, a theatre group that has achieved some magical results with special-needs children.
I originally sent Max there just to have a bit of fun, but in the six years since joining the group he has lived and breathed the theatre. It has been his lifesaver.
To watch him while he is performing is such a treat. When he is in front of an audience he lights up and becomes more confident and buoyant. He’s a natural.
Chickenshed has not just been a release from the stress of everyday life for Max but also a launch-pad for his break into film and television. This came as a surprise. People had told me Max was a good actor but I thought they were just being kind.
I think I changed my mind when he was ten and playing one of the main roles in The Night Before Christmas. He did it beautifully - he was amazingly comfortable on stage and adored the adulation of the audience. Something special was clearly happening.
A few years later, a casting agent was looking for a young actor to play the part of Ben in the film adaptation of Zoe Heller’s dark, unsettling novel Notes On A Scandal. Max’s name was suggested by several sources. He was on his way.
On the day of the audition, Max was beside himself with excitement. I was thrilled for him but wary of possible disappointment.
I need not have worried. From the moment we walked through the door, the audition belonged to Max. It was more of a casual conversation than an audition - Max was asked about his school and his hobbies, but his energy and enthusiasm reverberated from the walls and he ended up singing some of his favourite show tunes. He really wanted this part and gave it all he had.
The director, Sir Richard Eyre, and Maggie Lunn, the casting director, said Max’s performance had blown them away. He tends to do that - he knocks people off their feet. He lights up when a camera captures his face.
The next few days were agony. Max didn’t understand the concept of the audition, that he was competing with other children and he may not get the part. But when we eventually got the call it was good news.
A video of his audition had been sent to New York for the producer’s final approval and he was in. I was filled with pride.
In the film, Max plays Ben, a boy with Down’s syndrome. Bill Nighy is his father and Cate Blanchett his mother, a pottery teacher who has an affair with one of her pupils.
Judi Dench plays a fellow teacher who befriends and then betrays Blanchett’s character. Max appears in scenes throughout the film, and before rehearsals began Paul and I spent several hours every day for five weeks teaching Max his lines. We would read them out and Max would repeat them until he had memorised them.
Filming began in the summer of 2005 in a huge Georgian house in North-West London and lasted six weeks. It was an incredible if somewhat draining experience for everyone involved. Max likes structure and could be inflexible - refusing to change his lines or do another take.
And, being the diva he is, he would often issue imperious demands. In one scene, in which he plays a wizard in a school play, Max took exception to the pyrotechnics that went off when he waved his wand. ‘No fireworks!’ he ordered Sir Richard.
Another memorable scene - in which Max and his family are eating their Christmas meal - was filmed on one of the hottest days of the year. Max will jump at the chance to eat, so much so that he is worryingly overweight.
After the fourth take, I noticed the catering crew kept having to replenish the food on the table. One of the make-up women voiced my exact thoughts: ‘Good Lord, who is actually eating this stuff?’ Then it struck me - Max!
Max was eating the food. Each take had involved him robustly tucking into his Christmas platter. It was meant to be acting, but he had stuffed himself to the gills.
I came over in a cold sweat when I imagined the likely outcome. I didn’t have long to wait. Max, hot and uncomfortable, had had enough. ‘That’s it. I want my mum and I want to go home.’
I could hear him clearly, even from the hallway, and I knew we were in for a rocky afternoon. I grabbed his sweaty little hand and led him to the basement flat that had been set aside for him.
Sadly, the usual tricks to distract Max in moments of anguish failed on this occasion
I saw no way of pulling him back. Meanwhile, shooting had come to a grinding halt. Judi, Bill and Cate were forced to sweat it out in the heat, staring at their congealed roast potatoes and soggy veg.
The crew was wonderful. No pressure was placed on me to get my child to co-operate. Fortunately, I was able to summon Paul, who persuaded Max to see out the day’s filming. He arrived back on set to the embrace of all the actors.
Martin, the first assistant director, had a keen sense of how to handle Max. When he had finished his scenes for the day, Martin would allow Max to show off his dancing skills to the cast and crew.
True to his word, Martin set up the lounge and asked for a bit of hush. Max then declared he wanted his mum to dance with him. To me, the horror of such a vision was indescribable.
‘No, not her, my other mum,’ said Max. He was demanding that Cate Blanchett dance with him. She was wonderful and rose to the occasion. I was quick to grab Max’s hand once the music stopped and whisked him away before his ego got the better of him.
By the end of filming, Max had made a lot of friends, including Cate and Bill Nighy, who is surprisingly animated and flirtatious in the flesh, unlike his cool, bohemian characters. ‘Bill’s my mate - he’s great and really funny,’ Max said.
Notes On A Scandal has already had its New York premiere and has been nominated for three Golden Globes. It opens here in February. So we now have a Hollywood star in our family. Max fits the part perfectly. We are delighted for him, as well as being a tad relieved.
Max’s love of theatre and cinema shows no sign of abating. ‘I love acting,’ he says. ‘It’s fantastic. I want to do more when I grow up.’
And it looks like he may get his wish. This year Maggie Lunn was the casting director on Lynda La Plante’s Trial And Retribution XIII and was asked by the director to get a ‘kid who can really act’ to play Miles Deacon, a boy who is a key witness in a thriller.
This is a part not written for a boy with Down’s syndrome, just a boy with lots of talent. Max got the role.
With Max it is the little things as much as the big ones that mean so much to me. Late last year we were in a park cafe and settled down by the window with a tea for me and an ice cream for Max.
Scarcely a few minutes passed before Max had finished his ice cream and was beaming with contentment. I asked him if it was as good as it looked and he reached across the table and grabbed my cheeks with both hands.
He planted a big kiss on my lips and said: ‘You’re the best mum in the whole wide world, better than all the strawberry and all the vanilla ice cream.’
That’s enough for me.
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