Unconditional Love

by Jocelyn Moorhouse

  Rupert Everett, for whom I had written the character of Dirk, was now a big star after My Best Friend’s Wedding, and was getting lots of offers. When PJ told me he had pulled out of Unconditional Love, I burst into tears. All I could think was: How will we pay for Lily’s therapy now? PJ got some writing gigs and work directing a TV pilot; any money he made went straight towards Lily’s therapy costs.

  We were finally given a date for Lily’s special six-hour ‘intake interview’. Early one morning in December 1998, we drove to a dull brick building on the UCLA campus in Brentwood. PJ and I sat on a sofa while Lily was assessed in an adjoining room by two young women. She screamed for the first fifteen minutes, then there was silence, interrupted only by cheerful exclamations from her testers: ‘Good job, Lily!’ or ‘Fantastic!’

  PJ and I had a lot of reading material for our six-hour wait. One of the books I had brought was Thinking in Pictures, by Temple Grandin, published the year Lily was born. Grandin was one of the first people to speak about her personal experience of autism and went on to become an autism spokesperson. Her descriptions of processing experiences through mental images in her almost photographic mind helped me understand what Lily’s thought-processing might be like. (What a strange inversion, I thought, of Martin’s photographs and labels and sightless thought-processing in Proof.) Being a visual thinker myself, I began trying to see the world from Lily’s point of view. Later, thanks to reading the books by Temple Grandin, we were inspired to use pictures to help Lily with her daily life: to help her understand the steps required to put on her clothes, or wash her hands, we hung pictures on the wall and she memorised the steps. For years, every lamp, chair, table and window in our house had its own laminated label—visitors often joked that having labels on everything made them feel reassured!

  After Lily’s Lovaas assessment, we were told that she was, indeed, a very good candidate for the program, and that we should get our team together as soon as possible. Cori and I made flyers inviting students to apply. I found a cute photo of Lily and wrote under it in big, bold letters: ‘This Little Girl Needs Your Help!’ Cori posted the flyers on college noticeboards all over Los Angeles.

  The stand-out applicant was Heather Gonzales, a young woman with a mane of wild, curly brown hair and sparkling brown eyes. When she wasn’t attending classes at UCLA, she went surfing. Sporty and nearly always smiling, she became our team leader. Once we had found three other young women, all committed to at least six hours a week, we called Dr Lovaas and told him we had our team. Our three-day training session was scheduled for the first week of February 1999.

  A few years ago, when we were moving house yet again, I found a VHS cassette on which I had recorded that first ABA training session. I still had an old VHS machine, and I was curious. I pressed play. Paying attention, and eye contact, was Lily’s first lesson. The second was understanding that the person across the table wanted something from her. The third step was learning that, if she did what that person wanted, she would be rewarded. Cause and effect. These three steps can take weeks for some kids, but Lily learned them in an hour.

  The quality of that tape from twenty years ago was poor, but there was little Lily. Was she really so small? In 1999, her autism made her seem so all-encompassing! She was sitting at a small table with our ABA trainer, Betty Bostani, a tall woman with long black hair and perfect fingernails. On the table were two red plastic buckets, one for Lily, one for Betty. Next to each bucket sat a blue plastic ball.

  In the video, Betty says to Lily in a cheerful voice, ‘Do this!’ She puts the blue ball into the red bucket. It makes a satisfying thud. Lily is looking away. A student therapist behind Lily helps her grab her own blue ball, which she then drops into the red bucket.

  Betty immediately shouts, ‘Good job, Lily!’ and hands her a potato chip. Lily’s clever eyes twinkle. She doesn’t know what just happened exactly, but she does know everyone was happy with her and she got a chip. Betty takes the blue balls out of the buckets and places them back on the table.

  ‘Do this!’ says Betty, again dropping her blue ball into the red bucket. Lily is paying attention this time. Without prompting, she picks up a blue ball and drops it into her own bucket. The fourth essential—imitation.

  ‘Yay!’ shouts Betty, and we all applaud. Betty hands Lily another chip, which Lily eats while covering her ears. We are told to cheer softly next time. And we learn to vary the rewards. Chips get boring after a while, so we switch it up, sometimes offering tickles, or spinning toys, or playdough with a small toy hidden inside. Things had to stay fun and interesting for the whole three-hour session. It was hard work, and reminded me of my clowning lessons back in teachers’ college.

  As soon as Lily understood the system of learning (within weeks) the stimuli changed from three to two dimensions. As in photos. Photos of toys. Photos of food. Photos of animals. Photos of family members. Photos of places. I took all these photos. We had to have two of everything so Lily could match the pairs. Then we had to have different versions of everything. Not just one photo of one cat, but many different photos of different cats, so she could learn that all these different furry creatures went under the one label. Somewhere in my attic are boxes and boxes of these photos. I can’t throw them out yet. They were so much a part of my life, for so long. Like the white pebbles Hansel and Gretel left in the dark forest, the pictures we made for Lily were to help her find her way home.

  Lily did ABA for many years. Wherever we travelled around the world for work, we would set up new teams of therapists. Heather Gonzales often travelled with us to give Lily continuity in her program. Rhonda and I were also trained in ABA therapy. By the time Lily stopped doing ABA full-time, around the age of nine, she could speak in five-word sentences, make her own sushi, and even read and write at a basic level.

  Soon after beginning ABA, we went to a clinic in Descanso, a ninety-minute drive, to see the paediatrician Dr Ricki Robinson, who specialised in autism. In a small room with no windows, she videotaped PJ and me sitting on the floor playing with Lily. Afterwards, I was told (again) that I used too many words with Lily. PJ, on the other hand, who mostly made animal sounds when he played with Lily, was a ‘natural’ at floortime.

  Unlike many therapists who believed in the benefits of floortime, Ricki understood there was room for ABA as well as f loortime. She believed that there was no one-size-fits-all approach to treating a child with autism. Ricki also suggested we should have Lily tested for seizures. She said twenty-five percent of children with autism also developed seizure disorders.

  ‘Wouldn’t I notice if she was having seizures?’ I asked, dreading more bad news.

  ‘Not necessarily,’ said Ricky. She explained that sometimes the only sign is staring into space or fluttering eyelids, and that these kind of seizures can affect learning and memory.

  Rhonda, Lily and I drove the three hours to San Diego, to the only children’s hospital near Los Angeles that performed twenty-four-hour EEGs at that time. Lily did not enjoy having eighteen metal electrodes glued to her head. Each electrode was attached to a wire that connected to a computer box Lily was to wear on her hip for the next full day. To stop her from pulling the wires off, bandages were wrapped around her head. She hated it and tried to rip the cone-shaped turban off.

  The nurse handed me some forms to fill in, and pointed to a little red button on the computer box. ‘Whenever you notice what you think might be a seizure,’ she said, ‘I want you to push this button, then write down the time, how long the seizure was and what Lily was doing.’

  ‘But how will I know?’ I said.

  ‘Well, if she has a staring spell, or twitches or blinks strangely.’ This was not going to be fun. Lily often made strange facial expressions and stared into space. Would we be pushing the button the whole time?

  We decided to take Lily to nearby Sea World for the day. She attracted a lot of sympathetic stares: people probably wondered why we were subjecting a child apparently recovering from mas
sive head injuries to a day at a theme park. Later, in the San Diego hotel room, I held on to her all night, to make sure her electrodes stayed in place. The next day, when we brought the box back to the hospital, a technician plugged it into a computer and pages of data started printing out. I stared at the squiggly lines that represented Lily’s brainwaves. I wanted desperately to understand what I was looking at—the mysteries of Lily’s mind.

  Her test came back normal. No seizure activity. So that was one less thing to fear.

  Meanwhile, PJ was trying to find an actor to replace Rupert Everett as Dirk in Unconditional Love. He also needed to find the perfect Grace Beasley, our unpredictable Chicago housewife. Frances McDormand read the script and was interested, but she was in Dublin, performing in A Streetcar Named Desire at the Abbey Theatre. New Line decided to fly PJ there to talk to her. While he was packing, he asked if I wanted him to bring anything back. I suggested he look for some books on Irish fairies.

  Fairytales had been on my mind recently. During those long hours in the rocking chair with Lily, I sometimes thought about the fairytale in which a couple is blessed with a child delivered by fairies, but the child turns out to be different, strange.

  PJ returned with the news that Frances McDormand had issues with the script. He didn’t think she wanted to do the role. He also thought that, like Susan Sarandon, who had also been interested in the role, she may be too strong a presence to play a woman on the verge of disappearing.

  He had bought me a book in Ireland, not about fairytales, but about Irish folklore. I flicked through it and my eye fell on a chapter about changelings, fairy babies left in cradles in place of the human children. The fairy creatures looked like real babies, but wailed and screamed like demons. Parents had to go through all sorts of terrifying trials to get their child back. Perhaps the changelings were children with autism, I wondered. All kinds of barbarous methods were devised to try to force the fairy creatures to leave. Sadly, many kids (with developmental disabilities?) were killed. But I could imagine how, in more superstitious times, parents might blame dark magic for the changes in their children.

  It did seem to me as if the changes in Lily had happened overnight, as if she had been stolen away, or cursed by some spell. The primitive power of superstition can make parents, like PJ and me, vulnerable to exploitation—we were open to believing even the craziest methods might cure our child. Between 1997 and 2001 we tried vitamin therapy, auditory integration, facilitated communication and secretin therapy. We tried swimming with dolphins and hippotherapy. None of them cured Lily. Then the theory of a possible link between immunisation and autism burst into the news. All the parents were talking about it, convinced we had found the evil potion. Lily had been immunised with the MMR (measles, mumps, rubella) vaccine. Racked with guilt, I vowed that if I ever had another child, I would not vaccinate, just in case. This theory was later proved to be false.

  I decided to write a script about a modern couple whose daughter is stolen by fairies and a changeling put in her place. I wanted to explore how extreme emotions can put us in a place of primitive thinking. Not that I had time to write, only to muse on the idea and jot down notes whenever I could.

  In April 1999, Rupert sent us a message that he had changed his mind about Unconditional Love; he now wanted to do it after all. We were ecstatic. Once he signed on, New Line gave us the green light, on condition we cast an actress they approved of as Grace. PJ met with Kathy Bates and returned from the meeting besotted. ‘She’s Grace!’ he said. ‘She’s the one!’ Kathy is most famous for her roles in the Stephen King thriller Misery, in Fried Green Tomatoes and in Titanic. She is innately funny, very warm, and New Line loved the idea of her playing the role. Once she signed on, we knew we were making the movie.

  PJ headed back to Chicago, the city that had inspired Unconditional Love. I stayed in Los Angeles so Spike could go to school and Lily could continue her therapy. PJ moved into a high-rise apartment near Lake Michigan, very similar to the one we stayed in two years before.

  After a few weeks, the intense shoot was taking its toll on PJ. He begged us to come to Chicago. In November 1999, I packed up and moved us all to Chicago so the family could be together and support PJ. On the way from the airport, Lily looked out the taxi window, amazed at all the brightly lit trees. ‘Christmas trees! Christmas trees!’ she shouted happily.

  Rhonda and Heather came too, and were Lily’s therapists for the duration of the shoot. During their weekends off, I did Lily’s programs with her on my own. One Saturday, exhausted after doing therapy with her for most of the day, I was waiting for a local babysitter, so I could visit the set for a few hours. The sitter called to say she couldn’t do the job.

  As I was wiping away tears of frustration, I felt a little hand on my head. I looked up and saw Lily looking at me with big eyes. ‘Whassa madder?’ she said, and gave me a little hug.

  My tears dried up. Not only had Lily said her version of ‘what’s the matter?’, but she had seen that I was sad and tried to comfort me. This was major progress! This was language, combined with a recognition of emotions. She was imitating something she had seen others do. Now I was filled with happiness.

  One night, PJ was filming a scene inspired by the fireworks we used to watch from our apartment in Chicago. Fireworks technicians were at the ready on a barge on the river, taking their cues from our crew via walkie-talkie. It was pretty crazy and went on for hours. In the apartment, Spike was grumpy. He had stayed up late watching the fireworks, and now he was bored. He tried to sleep, but the fireworks kept going off.

  Finally, he sat up in bed, furious. ‘Daddy! Quit it with the fireworks!’ he shouted at the windows. ‘I mean, come on, Daddy, how many fireworks do you want?’ He turned to me, frowning. ‘Doesn’t he know I’m trying to sleep?’ His thoughts were probably shared by most of the residents in downtown Chicago.

  Eventually the time came for the cast and crew to fly to London so we could shoot the UK parts of the story. The flight from Chicago was fraught with drama. Midway across the Atlantic, Rhonda and I noticed a strong smell coming from Lily. She had somehow managed to have a major diarrhoea attack in her sleep. Thank heavens she was in a baby seat that had contained the mess.

  Rhonda pulled a face. ‘It’s all the way up her back and into her hair,’ she whispered. She disguised the poo-drenched, still-sleeping Lily in a blanket and carried her, along with the spare clothes bag and wipes, up the aisle to the plane toilet. I tore off the fabric cover of the baby seat and plunged it into a plastic bag. I used wipes to clean the seat at lightning speed and put them in another plastic bag.

  Somehow Rhonda gave Lily a complete bath and shampoo in the tiny bathroom. She brought Lily back with wet hair and a bewildered look on her angelic face. Her stinky clothes were now in their own plastic bag.

  Unfortunately, Lily was not finished. After two more diarrhoea episodes, there were no more clean clothes. I took off my cardigan and put Lily’s legs into the arms, and tied up the rest to look like pants. When we arrived in London, we carried Lily to a shiny limousine, dressed in her very odd cardigan pants. The driver didn’t comment on the ridiculous number of plastic bags Rhonda was carrying. Ah, the glamour of showbiz!

  We shot scenes for the movie in Ludlow and Hereford. I was thrilled when both Barry Manilow and Julie Andrews agreed to be in the film! During out time in Ludow I found out that Donna Williams, the Australian woman with autism who had written Nobody Nowhere, was living close by. As she provided consulting services for people with autistic children, I made an appointment. I couldn’t wait to meet her. Donna was an attractive, no-nonsense woman. I watched her interact with Lily, fascinated. Would my Lily one day be as capable as Donna? Would she be able to give advice to others and write books and music, as Donna did? I hoped so.

  20

  If they can’t learn the way we teach, we teach the way they learn.

  OLE IVAR LOVAAS

  I used to call Lily’s Lovaas therapists her guard
ian angels. We had a team to help Lily. We kept data and had meetings to discuss her. It was no longer just me figuring out what to do. One Easter, I gave them all individual baskets of chocolate eggs with a toy flamingo perched on top. ‘Flamingo’ was one of Lily’s favourite words at that time. She would say it over and over again. We were very impressed—three syllables!

  For the next four years my life was consumed by autism, and helping Lily. It was all I wanted to talk about. It was all I ever read and thought about. I drove my friends and family mad with my obsession with helping Lily improve. I was a very boring conversationalist. PJ begged for us to have a ‘no autism talk after 7 p.m.’ rule. That didn’t stop me thinking about it and reading about it.

  Mum and Dad came over from Australia for long visits, and threw themselves into helping me. They posed for photos standing on, under, next to and between objects such as tables, chairs and slides. Lily was learning about prepositions, and we needed pictures of objects (or people) being in, or under, or on top of things. I recently came upon a photo of Mum kneeling underneath Lily’s plastic slide, a big smile on her face. It brought back a memory of Lily saying, ‘Grandma is under the slide.’ Anyone discovering these photos in years would assume my parents (or the photographer) were rather odd.

  Mum, with her years of experience as a teacher, thought ABA therapy made a lot of sense. She also thought Dr Lovaas was adorable. She came to Lily’s clinic sessions at the Lovaas Institute and listen as the team discussed Lily’s progress. Dad was more of a cynic. He believed I was the most gullible and trusting of his kids and therefore needed extra protection.

  One day, at lunch, he proclaimed, ‘I’ll bet this Dr Lovaas is just another crap merchant, taking advantage of you.’