Unconditional Love

by Jocelyn Moorhouse

  Kathy and Greg agreed. Kathy had spent a lot of time with Lily on our trip home the previous year. She and Lily had bonded and grown to love each other. (They still have a special bond.) I hoped desperately my family was correct; I wanted to believe them.

  And friends sent me books and articles. The mother of one of Spike’s friends gave me a book called Late-Talking Children by Thomas Sowell. I read the book in a single sitting and it gave me hope. Sowell’s own son had been a late talker, but had caught up and become a genius of sorts. Albert Einstein had been a late talker. Was Lily, far from disabled, really a genius in the making? All my friends told me not to worry, that Lily would eventually talk on her own.

  But I feared the worst. The internet was relatively new in those days and I spent sleepless nights researching Lily’s symptoms online. I came across many terms to describe my strange little girl. Developmentally delayed. Speech delayed. Social Interactive Disorder. Neurological Disorder not otherwise specified. Pervasive Developmental Disorder. I would type in ‘late-talking children’ and the word ‘autism’ kept shouting back at me from the computer screen. I tried to stop myself, but eventually ended up clicking on ‘autism’. Familiar symptoms popped up.

  Problems with communication. Tick.

  Lack of eye contact. Tick.

  Problems with social skills. Tick.

  Repetitive behaviour. Oh God! Lily was obsessed with throwing items down our staircase. She once took out every book we had in our bedroom, her bedroom and Spike’s bedroom and threw them all down the stairs. Delighted, she watched them ricochet and tumble. We put them all away, only to have her do it again. Eventually, we placed all our books out of her reach and left her some balls to pay with. She threw these down the stairs too, collected them and did it again. And again.

  When I look back, it seemed to happen overnight. Of course, the seeds of autism were already there at birth. But, at first glance, autistic people look just like everyone else. Baby Lily smiled at us and giggled. She enjoyed being with us, and other people—until she got to around two years old. This is normally when children gain some communication skills, some pretend play, and learn to imitate. With Lily, these things didn’t occur. She became more and more confused and angry. I think she felt the need to make herself understood, but couldn’t figure out how to do it. We were not understanding her, and she was not understanding us. Most toddlers get through ‘the terrible twos’, but moderately and severely autistic toddlers remain frustrated. Frustration becomes anxiety, and then fear. Sometimes the anxiety and frustration turn into rage.

  Lily started to have screaming tantrums if the traffic lights went red and we had to stop the car. Entering a brightly lit supermarket was also a tantrum trigger. If other children tried to talk to her in the park, she would scream at them and run away. She would refuse to get off the swings or the slide, no matter how many children were waiting for a turn. Transitions of any kind were terrible. If it was time to get in the car and go home, Lily screamed and kicked and struggled as if she was being murdered. Once we got home, trying to get her to get out of the car was another battle.

  The most disturbing development was self-injury. I began following her around, trying to catch her when she threw herself on the ground. Rhonda and I put foam squares on the playroom floor to protect her. Then she started playing with her own faeces. She was still wearing pull-ups, so gaining access to the warm smelly stuff was easy for her. I sometimes found her painting her face and the walls with her own poo. The first few times upset me, but I just became accustomed to it. The poo-painting stage lasted for a few years. I thought it was a sensory thing: it felt nice, it made marks if you smeared it. Or perhaps she was simply trying to get the poo out of her own bottom, and after that didn’t know where to wipe it. Then she became terribly constipated. She could hang onto a bowel movement for weeks. We took her to the hospital a few times, where a paediatric gastroenterologist X-rayed her impacted bowel and gave her tons of laxatives, and an enema for good measure. We started giving her fibre drinks, with limited success. If she detected the texture of the fibre drinks, she would spit them out, or vomit up the lot.

  Lily hated more than one person talking at the same time, so family dinners became impossible. As soon as we began to chat with Spike, she would start screaming and throw her food. Eventually, we gave up family dinners all together. On Lily’s birthday, we tried to sing ‘Happy Birthday’ to her, but she screamed until we stopped.

  Convinced that Lily did not have enough stimulating ‘pretend play’ toys, I spent a fortune at Kmart purchasing baby dolls, a pram and a Fisher Price play kitchen, complete with fake food and cooking untensils. But Lily wasn’t interested in any of it, at least not in the way I’d hoped she would be. She liked taking the doll’s pram to the top of our driveway, letting it go and watching it crash against the wooden gates at the bottom. She liked grabbing handfuls of dirt from the garden and dropping them into her play kitchen sink. She liked putting her baby dolls in the toy fridge, or in the toy oven. It seemed to me that Lily was being deliberately perverse. She wasn’t, of course. She simply did not know how to play with her dolls, or her toy kitchen. She did not have ‘pretend play’ skills. She was playing, but in her own way.

  Around this time, we hired a weekend babysitter to come for a few hours on a Saturday to give me a break. Cori Carlsen was a delightful young woman, who was also very calm. Spike took a shine to her and she joined in his complicated fantasy games involving Greek myths and superheroes. He dictated epic stories to her (he was slow to write, as he had difficulty learning to spell) and she filled pages and pages of notepads. He then drew pictures to go with the stories.

  Lily quickly realised that if Cori came, it meant Mummy and Daddy would go out for an hour or two. As soon as Cori arrived, Lily began to scream, and would not stop for about an hour. I don’t know how Cori and Spike handled this so well. After a while Lily tolerated Cori. And we grew to adore her. As soon as we saw how capable she was at multi-tasking, we offered her a job as our full-time assistant, which she accepted.

  In the new year, I decided to sign up for a Mommy and Me group at a local nursery school. I went along, my stomach churning with nerves. I smiled at everyone, but the other mommies (who all seemed to know each other) ignored me. I felt like I was at high school again, but persisted for Lily’s sake. We only lasted a few weeks. Lily upset all the other little girls by shoving their dolls into the toy ovens and fridges. She had a sand-throwing episode, going into a state of rapture as she watched the glistening grains in the sunlight. Unfortunately, many of her little classmates got sand in their eyes. During circle time, one of the other mommies told me in a whisper that Lily’s behaviour resembled something she had read about.

  ‘It’s a sign of a fractious home life,’ she said smugly.

  ‘We do not have a fractious home life,’ I declared, indignant, while Lily screamed at a little girl who tried to hug her.

  The teacher told me I should probably see a specialist about Lily. And please don’t come back. We were both kicked out of Mommy and Me. I was furious. How dare they reject Lily? How dare they suggest there was something wrong with our home life?

  I started having irrational thoughts: I became convinced that other mothers forced their little girls to wear frothy pink tutus, princess costumes and stupid butterfly wings. Skipping was probably practised obsessively. It was all a conspiracy created by conformist mothers. If they were left to their own devices, girls would prefer dirt and worms and rolling things down driveways, just like my daughter. Lily could not skip. She never mastered it. Skipping requires sophisticated gross motor coordination. Who knew?

  I took Lily to see a developmental psychologist, Shelley Gallenson, a tall, elegant woman with long silver hair in a ponytail. She spoke with calm assurance, mostly to Lily, not me. She led us into a small room with a wooden doll’s house, a basket of peg dolls and some shelves full of simple puzzles. There were two comfy chairs, one for Shelley and one for me. Lily di
d not want to sit in the kiddy chair, and Shelley did not make her. Lily started to explore the doll’s house. She took a peg doll and poked it through a window, watching it clatter onto the floor.

  ‘Uh-oh,’ said Shelley. ‘Fall down, uh-oh.’

  Lily ignored Shelley and poked the doll through the window again.

  ‘Uh-oh! Fall down,’ said Shelley again.

  I tried to join in. ‘Oww, I fell out the window!’ I said, in the peg doll’s voice. ‘Please don’t throw me out the window, Lily. Please! No, no, ouch!’

  Shelley smiled at me kindly and said, ‘Try talking less.’

  I shut up.

  Shelley got a peg doll of her own and pushed it through the same window. ‘Uh-oh. Fall down,’ she repeated.

  Lily shoved her own doll through the window, and Shelley said, ‘Uh-oh,’ again. This went on for a while, until Lily abandoned the doll and found the barnyard animal shape puzzles.

  ‘I. Want. Puzzles,’ said Shelley, loudly and slowly, as if she was Lily. She hoisted Lily up on her knee, the puzzle in front of them. Amazingly, Lily did not squirm to get away. She was so interested in the puzzle she didn’t seem to notice Shelley. Shelley whipped all the animals out of their holes and held them in her hand. Lily tried to open Shelley’s fingers. Shelley let her have a sheep shape.

  ‘Baa baa,’ said Shelley, as Lily took the sheep shape and put it in the correct space. Then Shelley did the same with the remaining animals, making the appropriate animal sound as Lily wrestled each shape out of Shelley’s hand and put it in the matching space on the puzzle board.

  I stared at Shelley, stumped. I did not understand how copying Lily was going to help her learn to talk. Later, Shelley explained that a mistake parents like me often make with speech-delayed children is to try to talk all the time. They talk above the level of the child’s ‘receptive language’. Blathering on will not get through to them. Simple words like animal sounds, or sounds like uh-oh, will get through and eventually become part of the child’s ‘expressive language’. That was our goal with Lily: for her to understand that certain sounds and words had a meaning, and for her to imitate what we were saying, to communicate with us.

  Shelley gave me a copy of The Child with Special Needs, by Stanley Greenspan and Serena Wieder, and explained that she was doing ‘floortime’ with Lily, a form of therapy outlined in the book. These days it’s called ‘relationship-based therapy’. Greenspan and Wieder rejected the use of labels for the children they treated, arguing that the important thing was to recognise and respond to the weaknesses and strengths of individual kids.

  I began to read the book in a panicked blur. I had only read half of it when I decided to try doing some floortime with Lily. I didn’t want to wait for the next weekly session with Shelley. I was also reading Son-Rise: The Miracle Continues, by Barry Neil Kaufman, the story of how a family helped their developmentally delayed toddler, Raun, learn to speak. They took turns to lock themselves in a bathroom with him, while he spun plates on the bathroom floor. They spun plates alongside him until he noticed them. Gradually, over many months, he began to play with them, then eventually to speak.

  I tried to implement my own program, a combination of floortime and the Son-Rise method. I took all distractions out of Lily’s room, leaving just a couple of toys, some puzzles, her cot, a CD player and her rocking chair. I decided on twenty-minute sessions, followed by a twenty-minute break. All day. I had no idea what I was doing, but I couldn’t do nothing. That first day I closed Lily’s bedroom door and sat against it, so she couldn’t run away. She didn’t seem to notice me. She walked to her cot, grabbed her dummy from the pillow, pushed it through the slats and watched it fall to the floor.

  Okay, I thought, this is where I need to start. ‘Uh-oh. Fall down,’ I said.

  Lily slipped her dummy through the slats a few more times. Each time I said ‘Uh-oh’. There was another dummy sitting on the rocking chair, so I took it and crawled over to Lily and started shoving it through the cot slats, imitating her. She grabbed my dummy and put it in her mouth. I grabbed the one she had been playing with and put it in my mouth. Surprised, Lily actually looked at me. Then she pulled the dummy out of my mouth. I made a sad sound and put it back in my mouth. She tried to pull it out, but I hung on with my teeth, and made complaining sounds. She giggled. Finally, I let her pull it out, but then she put it back into my mouth. I was thrilled. She was interacting with me. Yay!

  I was impatient. I pulled out a puzzle, like Shelley had done, and sat Lily on my knee. Then we stacked plastic rings on a stick. She went back to her dummy game. This time we poked the dummies through the rungs on the back of the rocking chair. By now it was time for our break, and Rhonda gave Lily a snack.

  When we were due to go back upstairs to Lily’s room, she wouldn’t have a bar of it. As soon as I closed the door she started screaming and banging on the door. I ignored her screaming and put on some music. I held her and danced with her. She stopped crying and started smiling, soothed and entertained by our rhythmic cuddle-swaying in time to the music. Then I sat with her in the rocking chair and sang to her. She smiled and stared into my eyes. I sang ‘Twinkle, Twinkle, Little Star’, with all the hand movements, ‘The Bear Went Over the Mountain’ and ‘Mary Had a Little Lamb’.

  It was a small beginning, but I kept going. One day we were playing in the backyard when a plane flew low overhead. It made an ear-splitting screech. Lily cowered on the ground, her hands over her ears. I held her until the plane had gone.

  ‘It’s an aeroplane,’ I said. ‘Just an aeroplane!’

  The next day, while Lily and I were on a walk, a dog barked loudly behind a gate. Lily put her hands over her ears. ‘Aeroplane! Aeroplane!’ she said. I was amazed. She was using a word to tell me she was scared of the sound. She must have decided that ‘aeroplane’ meant all scary sounds. She had copied my word and used it to tell me she was scared. She was trying to communicate with me.

  I used to say to my friends: ‘I feel like I am breathing for her. If I didn’t, she’d stop breathing.’ I think most parents of autistic kids have this feeling. It is up to us to keep our children learning during their every waking moment. Our children’s future depends on what we do when they are small, when their brains are most plastic. It used to be thought that if the basics of language had not been learned before the age of twelve, the individual would never speak with fluency. Now we know this is not true at all. The brain can change and heal and learn new things for our entire life. But twenty years ago, the spectre of a window closing on Lily’s language-acquisition haunted me. I re-read Mary Beth’s report about Lily, its diagnosis of ‘a neurological disorder not otherwise specified’. I asked Mary Beth if she could recommend a paediatric neurologist.

  ‘Why do you want to do that?’ she asked.

  ‘Because Lily has a neurological disorder. Your report says that.’

  ‘Well, yes, but…’

  ‘If she has a neurological disorder, shouldn’t she be seen by a neurologist?’

  ‘Not necessarily.’

  ‘Why not?’ I asked, confused.

  ‘Well…’ Mary Beth sighed. ‘It won’t change the treatment. A neurologist will probably recommend you do exactly what we are already doing with her.’

  I insisted. She wrote me a referral to see Dr S, back at UCLA. He kept Lily and me waiting for ninety minutes in an examination room devoid of toys. Luckily, I had brought a bag of toys from home. There was also a chair on wheels that Lily found very entertaining: she could spin the seat and wheel the chair.

  Finally, Dr S walked in. ‘Hello,’ he said. ‘How can I help you?’

  ‘I am hoping you can help my daughter,’ I said, smiling politely.

  ‘How so?’ He looked at his watch. Had he decided, already, that we were a waste of his time?

  ‘Well,’ I forged ahead, ‘her paediatrician says she is language-delayed, and has a neurological disorder—’

  He cut me off. ‘Yes, yes. Let me examine her.�
�� He checked her eyes. He hit her knee with a little hammer. He watched her slide off the seat onto the floor to curl herself around the wheels of her new favourite spinning chair.

  ‘She looks autistic to me,’ he said bluntly.

  ‘But what about her language?’ I asked. ‘Sometimes she has words, then she can go months without saying anything.’

  ‘Autistic kids are often like that. She may never acquire proper language. In fact, she may get even worse than she is now.’

  A punch in the gut. He kept going, as if I needed to hear the horrible truth, once and for all.

  ‘Children with autism have lifelong communication difficulties. Her behaviour will probably deteriorate. She may never be able to show you any love, and she probably won’t develop empathy either. This is a lifelong condition with no cure.’

  ‘So what can we do?’ I pleaded, trying not to hyperventilate.

  ‘I cannot do anything to help you,’ he said. Then he left. Those ten minutes of hell cost me three hundred dollars.

  That night I couldn’t stop weeping. Lily had been given an official life sentence. There was no cure for autism. I plunged into a kind of grief. Having already gone through a denial phase (No, it’s not true, she isn’t autistic) a magical thinking phase (I will find a cure! She will eventually be normal!), I now progressed to an anger phase (Why my child? How dare the universe choose her and spare others!), after which the depression phase set in (I caused this. I failed my child. I am a lousy parent and this is proof!).

  The truth is I was coping with the death of a cherished fantasy: the fantasy of the daughter I had always imagined I would raise. I had wanted to help her find her voice and guide her to be strong. I imagined her being clever and happy. Now I had to adjust my expectations to the possibility Lily would never speak at all. I had to grieve for my imagined daughter before I could imagine real Lily’s future. What if she could never go to school or live independently? What if she became so unmanageable that we could not care for her? With all these frightening questions the guilt came rushing back.