We rented a house with an enormous picture window facing the ocean at Tamarama Beach. Every weekend, we walked along the cliff path to Bondi and back again. It was a spectacular walk, the waves crashing below and the vast swell of the Pacific Ocean stretched out before us. On Saturdays I took the kids down to the beach. At low tide there were glistening rock pools, which Spike and Lily loved to examine, prodding creatures. Sometimes Lily would stick her whole head into a rock pool, like a seal, and just look around. She was never worried a crab might nip her nose. Six-month-old Jack was afraid of the water. He was okay on the sand, but as soon as I began walking towards the waves with him in my arms, he began to scream. It would take years and years, and an obsession with Finding Nemo, before Jack let his curiosity about the sea win out over his fear.
Around this time, we found a brilliant autism school for Lily. Giant Steps, in the western suburbs of Sydney, was originally created by parents of autistic children back in 1995, the year Lily was born. The school used a combination of music, art therapy, occupational and speech therapy in the classroom, as well as play therapy, to foster emotional growth. Lily benefitted enormously from her time at Giant Steps, especially with her extraordinary therapist, Shaun Cochrane, who accompanied her in the classroom as her one-on-one therapeutic shadow.
Soon it was time to find our shooting locations. I wanted Holland’s property to have a magical quality; I imagined rolling hills and big mysterious eucalypts. Our location scout, Peter Lawless, lived in Bellingen and suggested we start our search there. Lynda, Jack and I made the trip to this stunningly beautiful place, where we spent the night in Peter’s cabin, tucked away in a thick forest. Peter cooked us dinner and Jack and I slept in a small room without curtains. I could see a star-filled sky through the window. I kept little Jack wrapped up in his one-piece fleece snowsuit. As we lay down to sleep, I could see his baby face, lit by moonlight, and his breath turning to mist. The next morning, the long grass outside the cottage was crisp with frost. When the sun hit the valley, steam rose in clouds. I realised how much I missed the Australian bush.
Uberto, Lynda and I assembled a wonderful crew and a stellar cast, including Russell Crowe, Hugo Weaving, Nicole Kidman, Jack Thompson, Colin Friels, Joel Edgerton, Anna Torv, Alex Dimitriades, Magda Szubanski and Vince Colosimo. On a Bellingen farm, in a copse of towering mountain gums, we built Holland’s house: weatherboard, painted dark red, with an odd stone tower on one side. The stone was actually carved from Styrofoam, as were our stand-by fake trees. With the help of an arborist, we had handpicked every eucalyptus tree scheduled to appear in the different scenes. The trees were to be the true stars of the movie.
The landscape we discovered, as we drove around the forests and farmland of New South Wales, still haunts me. One day, while we were looking at an area full of primordial boulders and moss-covered trees, a white horse emerged from the nearby forest and came to a halt in front of us. The whole crew fell silent. The horse looked at us for a few seconds, then walked right through the middle of our group, letting us pat its flanks as it passed, and went on its way. It was a dreamlike moment, almost like seeing a unicorn. The horse padded away, eventually disappearing among hundreds of scorched black gums, remnants of a recent bushfire. Fellini would have been delighted to have created such a moment on screen.
Closer to the beginning of the actual shoot, I was standing with the crew in a farmer’s field, examining a scar on a gum tree from which a bark canoe had been cut, who knows how many hundreds of years ago. You come upon these trees sometimes, and there was one in the script. Baby Jack was asleep in his car seat. I could see him from where we were standing. I glanced back and saw that a herd of about twenty black-and-white cows had silently appeared from the trees and were now surrounding the car, a few poking their heads through the open doors, staring at Jack. I ran back to the car, panicked, only to find Jack smiling at an enormous cow face inches from his. He has loved cows ever since, but they have to be Friesians.
Trouble was brewing with the making of the film. After the first day of rehearsal, I had a major falling-out over the script with Russell Crowe, whom I had cast as the storyteller character. He was not only Ellen’s love interest, but the narrator of all the magical love stories in the movie. As the shooting date got closer, Russell wanted to change major parts of the screenplay. Having already made substantial changes, I didn’t want to change the script anymore. The studio heads at Fox Searchlight tried to help us find a compromise, until, on 11 February 2005, five days before we were scheduled to begin filming, they pulled the plug on the money, and the movie died.
It was extremely disappointing. A lot of people had spent nearly a year of their lives prepping this film. Sets had been built. Deals had been made with actors. I was devastated: all my work had come to nothing. And I was sad that I had lost my friendship with Russell.
The collapse of the movie was a big story in the Australian press. PJ took me on a short holiday to get away from the reporters camped out the front of our house in Tamarama. Antonia looked after the children while we headed for Katoomba in the Blue Mountains. PJ wouldn’t let me feel sorry for myself for too long. He took me on long, exhausting hikes. There were damned eucalyptus trees wherever I looked! I kept raging at him. All I wanted to do was curl up in bed, or get drunk, but I knew he was making me push through the sadness, forcing me to be strong. He refused to let me go under. It worked, and I returned to Sydney much calmer.
I heard recently that the set of Holland’s house still stands somewhere on a farm in Bellingen. I like to think of it among the trees, with cows and kangaroos wandering around it, perhaps inside it, a memorial to a beloved movie that exists only in my imagination.
23
How does language interact with thought? Does language enable us to think, or does thinking enable us to talk?
V. S. RAMACHANDRAN
After Eucalyptus collapsed, we stayed in Sydney for a while. Now that I was out of work, I could spend all my time with the kids. I made the most of it, but I began to notice odd things about Jack. He began screaming in the supermarket, staring in horror at the brightly lit shelves. Was it the fluorescent lighting? I ended up fleeing with no shopping. As soon as we were outside, Jack stopped screaming. I took him into a toy store that had soft, yellowish lighting. He was completely happy.
Jack’s great love of books began to emerge around the same time. But he didn’t simply look at the pictures. He would obsessively turn the pages back and forth, memorising the order of the illustrations. I thought he was advanced for his age, exceedingly clever.
One morning, when he was thirteen months old, I noticed he was acting strangely. No longer a bright-eyed, smiley toddler, he went into a short trance, his eyes unfocused. He was also starting to fixate on strange things: two power points symmetrically placed on opposite walls in our lounge room. Jack seemed to take delight in the symmetry of these power points. Repeatedly, he would walk from one side of the room to the other to examine them. My autism radar switched on.
I interrupted him and read him one of his board books. As I had done with Lily, I read to him by putting him on my lap facing me, so I could hold the book up and he could see both it and my face at the same time. After reading several books, I let him get down again. He went straight back to the power points, checking on their symmetry again and again. I took him out to the park and down to Tamarama beach. A soon as we got home, he started doing his thing with the power points again. I felt a cold stone forming in my gut. Fear again.
A couple of days later I realised I hadn’t seen him pointing recently. I had photos of him pointing. It was a skill he had now lost. I knew that losing the ability or desire to point was a bad sign, because this simple gesture is a basic form of pre-verbal communication. Then Jack lost the handful of words he had acquired. The worrying symptoms were like falling dominoes. Loss of words, loss of gestures, loss of eye contact, loss of games, the development of obsessive repetitive behaviour.
It was happ
ening again.
There’s a moment in the beautiful Julian Schnabel movie The Diving Bell and the Butterfly where the main character, the victim of a catastrophic stroke, imagines his brain falling apart. The film cuts to footage of glaciers calving, huge chunks of ice falling into the ocean. That image of slow but massive destruction is how I felt as I watched Jack. It seemed to happen over one weekend. But that cannot be true. What is true is that my awareness of the truth evolved over one weekend. I immediately made an appointment for him to see a childhood developmental specialist in Sydney.
‘He’s fine,’ she reassured me. ‘He’s only thirteen months old. Lots of kids this age have little delays.’ I had heard all this before. She did all the proper tests and he passed as ‘normal’. And she wrote me a referral for a speech therapist. ‘Just in case.’
The first thing the speech therapist did was have me sit Jack on the floor. She placed a wind-up jack-in-the-box in front of him. She wound the handle while the tinny music played the melody of ‘Pop Goes the Weasel’. Jack watched her hand as it went around. As the music reached its climax, the lid of the box burst open and a colourful toy clown popped up. Jack laughed at the clown.
I laughed too. ‘His name is Jack,’ I told him, ‘just like you, darling.’
Jack didn’t look at me.
The speech therapist repeated the whole procedure. ‘I am worried he’s not showing joint attention,’ she said.
Joint attention is a shared moment. It nearly always happens when something unexpected happens. The clown pops up, startling the child. The child looks to the adult, checking whether or not he should be alarmed. If the adult seems happy about the clown doll, the child relaxes.
‘Oh no,’ I said. I knew, from years of research, that the absence of joint attention was a warning sign.
‘Don’t panic,’ said the speech therapist. ‘His joint attention is a little delayed, and his pre-speech utterances are also delayed, but it’s nothing to worry about yet.’
Another two months went by. I sensed that Jack was slipping away from us. PJ and I decided to pack up and move back to the USA, even though neither of us had any work on offer there at that time. We wanted to be near our trusted autism experts, the people who had helped Lily.
‘Tell me he doesn’t have autism,’ PJ would say, practically begging me to lie.
‘I can’t say that,’ I would reply.
‘I don’t think I can go through it again,’ he would say. ‘Not Jackie.’
No. Not Jackie. Not our dimpled, magic elf. Not him. Please not him.
The day before we left Sydney, I got an email from a producer, Emma Cooper, who had slipped a book into my letterbox, hoping I might have time to read it and consider adapting it into a movie. I told her I was about to leave the country, but that I would take it with me and read it. I went down to my letterbox and found The Dressmaker, by Rosalie Ham. I packed the book in my suitcase.
Once we were back in Los Angeles, back in Santa Monica, I contacted Dr Anshu Batra, a young developmental paediatrician, the mother of a child with autism. Her practice was devoted to children on the autism spectrum. On 6 June 2005, within fifteen minutes, Anshu gave Jack, our darling prince of smiles, his own diagnosis of autism.
I broke down in her office.
Dr Bantra looked at me sadly. ‘Surely this cannot come as a surprise to you?’
I shook my head. It wasn’t a surprise. But I had still hoped she might tell me that our fears were baseless. Antonia was in the waiting room, keeping Jack entertained. When she saw my face, she started to cry too.
On the way home, I sat silently in the back seat, holding Jack’s hand. I was trying to figure out how to tell PJ. He loved Jack so much and had been so relieved by the reassurances of all those doctors in Sydney. The news was going to hurt him terribly. I decided to wait until I got home. When I told PJ, we both broke down.
Jack’s diagnosis was devastating. In the weeks that followed, Spike went into a kind of shock. He was angry. I was trying to keep everything together. Spike, who was now fourteen, confronted me one night. ‘You don’t seem very upset,’ he said.
I stared at him, and shouted, ‘I am upset! I’m trying to be brave!’
He gave me a huge hug and said he was sorry. We were all in agony because we knew what was going to happen and it just seemed so bloody unfair. PJ and I hoped we had the strength to do it all a second time with Jack. All the therapy, the research, the expense and the heartache.
I took Jack to see Ricki Robinson in Descanso. In the same office where I had brought Lily, she confirmed Jack’s autism diagnosis, and said we should start therapy as soon as possible, for at least thirty-six hours a week. ‘But first, he needs to have a twenty-four-hour EEG done,’ she said. Oh no. Not again.
This time Ricki sent us to see a Dr Chez in Chicago. Jack had his own ‘mountain hat’ for a day. When we returned to the hospital the following morning to have his bandages and electrodes removed, once again I watched the printer spew out pages and pages of squiggly lines—Jack’s brain activity.
‘What does it say?’ I asked the technician.
He glanced at me. ‘Dr Chez will have to read it. He’s the expert,’ he said.
We flew back to Los Angeles. Two days later, Dr Chez called to tell us that Jack had experienced over one hundred absence seizures in his left temporal lobe in the twenty-four-hour period. There was an electrical storm going on inside Jack’s head every night, wreaking havoc on the part of his brain that dealt with memory and language. Dr Chez said it might be the cause of Jack’s sudden loss of language. ‘Whatever he is learning during the day gets erased by the seizures while he sleeps.’ His long-term memory process of learning words was being constantly interrupted, so that the memories were not being stored on a permanent basis.
Every couple of months, Dr Chez visited Los Angeles to see patients. I asked for a consultation for Lily, who had developed some disturbing behaviour. She would suddenly throw up, or start screaming, ‘Headache!’ She could go from calm to enraged in seconds. Sometimes she would become so angry she would fling her arms around and hit whoever happened to be in the way. Occasionally she would weep for days.
Dr Chez thought she might have bipolar disorder on top of her autism. It was possible that the hormones released during puberty had triggered a mood disorder. It was hard to tell, he explained, because people with autism can have unexplained mood swings. Lily’s verbal communication was very basic, so we had no real way of knowing what she was feeling inside. Dr Chez requested an MRI for Lily, to check for possible problems in her brain.
As big as a car, an MRI machine looks like a doughnut. The person being scanned lies on a platform that slides inside the doughnut hole. Lily was terrified. It soon became clear that she would have to be sedated. It took two strong men, plus me, to keep her still while the sedative was injected.
She needs to have this done. She needs to have this done, I kept telling myself, feeling like a terrible mother. Finally the sedative took effect and Lily stopped struggling. They placed a plastic frame around her head to keep it still, then secured straps around her body. A technician told me to come into the observation room. I said I preferred to stay close to Lily, in case she woke up.
‘I’ll get you some earplugs. It’s loud,’ he said.
A voice came over the intercom. ‘We will be starting the MRI in ten seconds.’
I sat there, watching my little girl. She looked so vulnerable, strapped into the weird machine. Kerchunk! Kerchunk! Kerchunk! It sounded like a giant camera shutter taking pictures. Kerchunk! Kerchunk! Kerchunk!
The whole thing took about ten minutes. I waited with Lily in the recovery room and the technician brought me her films. I was relieved to find she had no tumour or lesions. She did, however, have a mild brain abnormality called a Chiari malformation type 1. The lower part of her brain had slipped into an opening in the skull where the spinal cord passes through. The resulting compression can cause headaches.
A few days later, Jack had an MRI as well. Like Lily, he also had to be held down to be sedated. Fortunately, he did not have any tumours or lesions or the Chiari malformation. His epilepsy was electrical.
Ricki suggested we take Jack to Smart Start, a preschool for kids with special needs. There we met early-childhood educator DanaKae Bonahoom, who in turn introduced us to Stephanie Gregorich, a petite blonde woman who beamed at Jack and started showing him puppets and toys, and pulling faces with him in a big mirror.
DanaKae watched Jack carefully. ‘Notice he never looks up above his own eye level?’ she said.
I had never noticed this, but I saw she was right.
‘We will work on encouraging him to look up and around, so that he will take in more information. We will encourage him to look at our faces for information. That’s why we have a mirror. We can meet his eyes in the reflection.’
Soon Jack learned that human faces were the most entertaining and rewarding objects in his world. Stephanie came to our house to work with Jack, and to teach PJ and me the proper floortime way of playing. She used her face and voice to become Jack’s favourite toy, and she taught our family how to do the same. It was almost like being cartoon characters. When talking to Jack, she used what they call ‘Big Affect’ in her facial expressions. In the beginning, we all got down on Jack’s level, so we could be in his field of vision. Eventually, he learned to seek out our faces.
As soon as Jack turned two, he began taking anti-seizure medication. On Christmas Day of 2005, my friend Kaja gave Jack a set of flashcards with animal photos on them. I poured out the cards onto the floor in front of him. To my complete surprise, Jack picked up one card after the other and named the animals. ‘Duck, pig, horse, cow, sheep,’ in his sweet little voice. It felt like a miracle. PJ, Spike and I sat down with him on the floor, placing more and more animal cards in front of him. ‘Cat, dog, goat, bird.’ He knew them all. Jack was talking. Hallelujah!
Unconditional Love Page 20