Unconditional Love

by Jocelyn Moorhouse

  The flight staff asked us to get on the plane last, so the other passengers would not have to endure Lily’s screaming. I understood. I had seen the alarmed faces of my fellow passengers as they stared at me in the departure lounge. Lily continued to scream as I took her to her seat. As soon as the engines started up, however, she calmed down. She looked out the window at the lights of the airport, and fell asleep as we took off.

  In Los Angeles, we took her for a check-up with her paediatrician, Dr Linda Nussbaum. Linda was concerned that Lily had very few words. She should have been talking by now. PJ and I tried to make a list of Lily’s words: yellow, flower, happy, moo. That was it, and we had to admit that we hadn’t heard even those words in the last month. Later, I would learn that even those few words weren’t typical for a baby on the verge of speaking. She should have been saying things like Mummy, Daddy, more, no, bye bye and up. And she never responded to her name. Linda thought Lily might have a hearing problem and gave us a referral to a hearing clinic. I was confused: I knew that if I turned on an episode of Barney & Friends, Lily would come running. She paid attention to the TV show’s theme music, but not to the sound of her own name.

  The testing room at the House Ear Institute was dark. I sat on a chair, Lily squirming on my lap. She didn’t like the dark room. To our left a little box was suddenly illuminated. Inside the box was a wiggling monkey puppet. On our right, a loud quacking sound startled me. Lily could not decide whether to look at the wiggling monkey or listen to the loud duck. A young woman in a lab coat sat cross-legged on the floor right in front of us. She offered Lily a toy cat to play with. Lily reached for the cat, but the girl in the lab coat pulled the cat away. The lights went out again and we were plunged into darkness. To our right, another little box was illuminated. Inside was an octopus puppet, quivering silently. To our left, the sound of a bell ringing.

  This confusing and irritating sequence of events went on and on. I figured it out. The boxes that light up were to get Lily’s attention. The random sounds were to test if she reacted to them. Was the girl in the lab coat, offering and withdrawing the toy cat, some kind of auditory palate cleanser? Lily got more and more frustrated with her.

  Somehow it was established that Lily’s hearing was normal. The technicians asked me to take a seat with Lily in the waiting room. A few minutes later, a young woman walked towards me with a handful of forms. She introduced herself as Louise, an audiologist. Louise told me she was giving me a referral to the Westside Regional Center for further testing.

  ‘What is a regional center?’ I asked.

  Louise gave me a funny look. ‘It’s where they help you apply to get special needs funding from the government.’

  ‘What are you talking about?’ I said. ‘Lily isn’t special needs.’ Louise handed me the forms. ‘Call Dr Nussbaum. She will be able to explain everything to you.’

  I guess she had had this conversation with hundreds of yet-to-be-devastated parents. I was bewildered and a bit cross. Special needs! Not my Lily.

  I went to see Linda Nussbaum without Lily. ‘The audiologist,’ she told me, ‘suspects Lily has a developmental problem.’

  This was the first time I had heard the term developmental problem. I soon found out it was a euphemism for cognitively impaired. Linda was trying to tell me that Lily might be what used to be called mentally retarded.

  Meanwhile, I was invited to Utah to be an adviser at the Sundance Directors Lab. I was one of six advisers, directors, writers, cinematographers and editors. We were there to mentor a diverse group of new filmmakers. It was summer, so I brought Spike, Lily and Rhonda with me. I thought it would good for the kids to have some time in the mountains while I did my work. I had high hopes this would be a great experience for us all.

  On our second day at Sundance, I had the morning off. We decided to take a chairlift ride up the mountain. Rhonda, Spike, Lily and I squeezed into one chairlift seat. We placed Lily between Rhonda and me, so we could both have a hand on her. The view was magnificent. Soaring mountains above, grassy slopes below us. About thirty seconds into the ride, Lily started to writhe and scream. We were now hundreds of feet above the ground. She struggled with all her might to escape the vicelike grip Rhonda and I now had on her little arms. Her strength was terrifying. Spike clung onto the safety rail, begging us to stop Lily from falling. Rhonda and I made terrified eye contact as we tried to stop Lily from plummeting to certain death. We finally got to the top of the mountain. I jumped off the chairlift and pulled Lily to safety. Rhonda and Spike followed and we all lay on the grass, panting. Rhonda and I both kept one hand on Lily, who was calm now, as if nothing had occurred.

  ‘What happened?’ asked Rhonda.

  ‘I don’t know. That was very scary,’ I said, shaken.

  Why had Lily done that? Was she going to do it again on our way down? We wandered around, planning our descent. I considered walking all the way down with Lily, but that would have taken hours.

  ‘And there might be bears,’ added Rhonda.

  That changed my mind. Instead, Rhonda gave me her scarf and said we could use it to tie Lily to me. If she did manage to squirm out of our hands, we would have a safety leash that would give us time to grab her. And so we made it back down the mountain. We decided we would find somewhere for dinner. Lily did not agree. She screamed and struggled in the doorway of every restaurant we tried to enter.

  Back in LA, we began an exhausting journey from specialist to specialist. We got an appointment to take Lily to UCLA Children’s Hospital for further testing by a developmental paediatrician. The next available appointment was on 17 December, the same day as Spike’s seventh birthday party at our house. But I didn’t want to wait three months for another appointment. I took Rhonda with me for moral support.

  The waiting room was cheery, with books and toys and a large fish tank. Lily squished her face against the glass, blissed out. A short woman in a tweed jacket and skirt introduced herself as Dr Judy. I took Lily by the hand and Rhonda stood up to come with us.

  ‘Is it okay if her nanny comes too?’ I asked.

  Dr Judy scrutinised Rhonda. ‘No. Just you and your daughter, please. Follow me.’

  I left Rhonda behind by the fish tank, and followed Dr Judy.

  ‘I see so many children with language problems these days,’ she muttered, ‘and they all have nannies.’

  So here I was in yet another small, dark room. This time I was watching Lily through a two-way mirror. Dr Judy sat beside me, taking notes. Lily was examining some colourful puzzles while a medical student ‘played’ with her. The student was, in fact, performing cognitive tests on Lily to measure her hand-eye coordination and her fine motor skills: she had to place three wooden blocks on top of each other, then lower a bead necklace into a plastic tube. Next the puzzles came out and Lily started matching up the pieces at lightning speed.

  Dr Judy turned to me. ‘These are puzzles for six-year-olds, and she’s only two.’

  ‘Way to go, Lil,’ I laughed proudly.

  ‘No, that’s not good,’ said Dr Judy. She didn’t explain why.

  After a while Lily got bored and started tiptoeing around. She came up to the mirror to gaze at her own reflection. She looked so pretty. ‘Look,’ I said to Dr Judy, ‘she’s pretending to be a ballet dancer.’

  ‘No, she’s not,’ she replied in an ominous tone. ‘That’s bad, what she’s doing. It’s called “toe walking”.’

  Okay, call it by another name. It didn’t mean anything to me at that point. It was still cute. I smiled at Lily, but of course she could not see me.

  After half an hour of observing Lily and scribbling notes, Dr Judy turned to me and said, ‘You will have to wait a few days for my report, but I can tell you right now she is showing autistic tendencies. I will be recommending intense and immediate developmental intervention.’

  And that is the first time the word autism came into Lily’s life. ‘Autistic tendencies.’ It wasn’t a definite diagnosis yet, but it wa
s a terrible cloud hanging over my darling daughter.

  I was so frightened my voice gradually stopped working over the next few hours. Then there was the stress of going ahead with Spike’s birthday party in a state of blind panic. The house was full of raucous third-graders. I went through the motions of arranging bowls of chips and gummy snakes.

  When Dr Judy’s report finally arrived, it was full of complicated test scores and graphs and comparisons with other children, page after page describing Lily as abnormal. Her lack of speech development was a red flag. Her lack of imaginary play was another cause for worry. Her poor hand-eye coordination and lack of interest in engaging with other people were also indicators of developmental issues. The concluding paragraph stated that, because of her age, it was too early to give her a diagnosis of classic autism, but that she was showing definite signs, and should be monitored carefully. Immediate speech therapy was advised.

  I knew a little bit about autism. I had read Dibs in Search of Self and the memoir Nobody Nowhere, by Donna Williams, an Australian. My generation had been fed the story that autism was a psychological condition. In the 1940s, an Austrian-American psychiatrist, Leo Kanner, had argued that autism was associated with motherly neglect or, worse, abuse. He even inspired a term for the evil-doers: Refrigerator Mothers. For a while, mothers were blamed for damaging their kids, and advised to do psychotherapy to help them change their ways. Children were separated from their ‘unfeeling’ mothers to help them recover. Kanner’s bad-mother theory was discredited when autism was found to have a biological basis, but the causation myths lingered.

  Kanner’s theory didn’t make any sense to me. I knew I had not neglected or abused Lily. Her father and brother and I had poured our love into her from the moment she was born. How could we have caused her autism? I bought books on autism. I sought second opinions. I kept hearing that if autism was an accurate diagnosis, Lily would need lifelong care. Autism had no cure. Lily might never speak, never feel love, might never even know that PJ and I were her parents. There was a possibility that Lily would end up in an institution.

  It was the beginning of my ‘magical thinking’ phase. Part of me blamed the diagnosis itself—the labelling of Lily—for causing her symptoms to manifest themselves: as soon as she had the label, she seemed more autistic. I read a passage from an autism book to PJ. ‘Listen, it says that signs of autism include excessive screaming, flapping hands, grinding teeth, avoiding eye contact, but Lily doesn’t do any of these things.’ Within days, she was doing all of those things.

  Next I blamed my career and myself for not being a ‘normal’ mother. It felt like there was a curse on me, as if I was being punished for going back to work on A Thousand Acres so soon after Lily’s birth. I wept for weeks, desperate to wake up from the unbearable nightmare. I made a deal with myself: I would never make another film if only Lily’s autism could disappear. But autism is not caused by your mum making a movie.

  My DNA, however, could bear some responsibility. My genes and PJ’s genes had contributed to creating autism in our child. The current thinking is that a genetic predisposition to autism then requires some kind of ‘environmental’ trigger, possibly chemical, or a viral injury that switches a gene on or off. It’s complicated and mysterious. If scientists could find out how the autism switch gets turned on, they might be able to figure out how to turn it off, or prevent it being turned on in the first place. But experts are still a long way off from answers.

  I am aware that some of the readers of this book may be autistic themselves and could possibly find this chapter upsetting. Please understand that I wasn’t rejecting Lily because of her autism. If you keep reading, you will discover that I love her autism, and her brother’s too. But twenty years ago I was afraid for Lily’s future. Everything I read said that people with autism suffer a lot, and that there is no cure. My mind filled with images of Lily never being able to do anything for herself. I was afraid she would be always unreachable and never find independence or happiness.

  PJ and I were both so shattered by the diagnosis that in the beginning we didn’t know how to support each other. We had a big fight one day because I felt he didn’t seem as sad as I was. He was actually being stoic and holding everything in.

  ‘Why aren’t you as devastated as I am?’ I asked accusingly.

  He looked bewildered. ‘I am devastated. Of course I am!’

  ‘Well,’ I snarled, ‘you don’t seem to be falling apart like I am.’

  ‘Joss, we can’t both fall apart. One of us has to keep making money to afford all the therapy she will need to have!’

  PJ’s way of coping was to become proactive about supporting us all. Mine was to become super-mummy-therapist. PJ told me I was not allowed to fall apart because he and the children needed me.

  I took Lily to see a child psychologist in Santa Monica. Mary Beth Steinfeld sat Lily and me down with a group of assorted toys and watched us playing together. Lily and I played a simple game that Lily loved. She would throw a ball at me and I would pretend her throw was so powerful she could knock me down. I would fall over backwards with a squeak. Lily would shriek with laughter and want to do this over and over again. After about half an hour, I picked up Lily and gave her a hug.

  Mary Beth looked at me. ‘You know you’re going to have to give up work. You’re the only one who can reach her and teach her right now.’

  ‘Of course,’ I replied. ‘I can stop work for six months, no problem.’

  ‘No,’ said Mary Beth, ‘I mean you have to give up work completely, for years.’

  ‘Oh.’ For years.

  I assumed she was exaggerating, but helping my child was the most important thing in my life. This was an emergency. What was filmmaking compared to my daughter’s brain, her language, her relating to others? I dived in obsessively. Giving up writing and directing allowed me to direct my energy and creativity to helping Lily. But I needed to learn that I couldn’t rush her learning. I would have to go at the pace she needed. I had to be constantly available for those ‘teachable moments’. I had to change my instinctive way of parenting. Our family would have to learn how to interact with Lily in a new way. If we pulled this off, Lily might be able to adapt to life in a world that, to her, seemed confusing and sometimes downright hostile.

  Rhonda was a great support. She loved Lily and cried when she heard the diagnosis. Then she learned ways to help Lily and became one of her best therapists. She also encouraged me to have naps, to eat well and to spend time with Spike, who was feeling lost. He was only eight, but he was afraid, and felt the seismic shift when all our parental energy went to helping Lily.

  One day I was walking him home from a playdate. He suddenly asked, ‘Mummy, will I catch autism? Will my brain break like Lily’s did?’

  My heart did a painful lurch of grief.

  ‘No, darling,’ I told him, ‘You cannot catch autism. Lily’s brain was already like that when she was born.’ I didn’t like repeating his word ‘broken’. But he had to have something he could tell his friends about his strange little sister. ‘Broken’ was an easy concept for third-graders. And ‘broken’ things often got fixed, so there was a possible happy ending in this description.

  Spike was always a great big brother. Even during what PJ and I referred to as Lily’s ‘Regan-from-The-Exorcist’ days, Spike treated her as his little sister. He knew she was complicated, and sometimes extremely annoying, but he loved her, and she loved him.

  There were times when Lily’s behaviour became especially difficult to handle. Before she developed some communication skills, she sometimes became very frustrated. Her frustration was so intense, she became violent. She would hit and kick us, and bite me on the arm with astonishing jaw strength. She would punch and scratch her own face. Once she hit her face so hard against a door that her nose bled for half an hour. She resisted all our efforts to staunch the bleeding. She smeared her face with the blood and put red handprints all over the walls. She would hurl her little body
onto the floor, over and over again, until she was covered in bruises. She hardly ever slept. She would keep herself awake by screaming half the night. All my instincts said: ‘I cannot leave Lily’s side. I will not leave her side until she is better.’

  But better would take years, as it turned out.

  17

  Think of it: a disability is usually defined in terms of what is missing…But autism…is as much about what is abundant as what is missing, an over-expression of the very traits that make our species unique.

  PAUL COLLINS

  After the initial shock wore off, I called Mum.

  ‘Rubbish!’ she said, and shouted to Dad to pick up the other phone.

  ‘There’s nothing wrong with that child!’ Dad said.

  ‘She’s completely normal!’ agreed Mum. ‘She’s just a late talker, and as for being a little strange, you were a little strange, and you turned out fine.’

  ‘I was strange?’ I asked, curious. This was news.

  ‘Yes, we even thought you might be autistic for a while, didn’t we, Jack?’

  ‘What?’ I asked. Was Mum making this up, or had she never thought to tell me this?

  ‘You didn’t like being hugged,’ said Dad.

  ‘Yes I did.’

  ‘No you didn’t,’ said Mum. ‘You would always push us away.’

  It’s true. There were some hugs I didn’t like. My father’s hugs used to scare me. He was a rib-crushing bear-hugger, and quite famous for it in our family. He broke Grandma Wood’s ribs once, out of affection. It was as if Dad didn’t know how to give medium-strength hugs. He would hug me until I saw stars in my eyes. I thought I would suffocate and die. For an asthmatic child, that was not an enjoyable experience.

  ‘She’s not autistic. Get a second opinion,’ said Mum.