I Have Been Buried Under Years of Dust Read online

  My law practice was varied, which I liked as it never got boring. I had my own practice with offices first in Beverly Hills, then in Century City, and handled civil litigation matters mostly focusing on financial issues. I had perfected the 8:00 a.m. to 3:00 p.m. workday—I never ate lunch—and most afternoons could head to the Sports Connection gym on Ocean Park Avenue before going home to get ready for the evening, which often included going out. It was a perfectly fine life. Though I’d dated and had a few relationships that appeared promising, I was still hoping to meet that special someone.

  Most Friday nights I showed up at my friend Wendy Moss’s house, complaining about the dates I’d had that week. She was a deputy district attorney. I think her husband grew sick of me crashing their Fridays. I am more than certain it was he who encouraged her to fix me up with someone and give them back their time.

  With very little warning, she did just that. She let me know I’d be contacted by one of her friends, a public defender, who she thought might be a good match. Soon, I received a call from Tom. After a few pleasantries, he asked me to dinner.

  We met at an Indian restaurant for what I expected would be an hour-long meal. Over samosas, Tandoori chicken, and saag paneer, I learned that he was smart and funny with a very dry sense of humor. He playfully teased me about my corporate clients, putting himself in the Robin Hood role against my Prince John.

  “If we had a dinner party and got our various clients together, we’d have just about every representation of society at the table,” he said. “It would end up in a food fight.” He got me to laugh at myself.

  Tom remembered that night as well. “A bunch of people had been setting me up on blind dates and none of them had been any good. I was tired of it but said yes to Wendy, thinking I’d get this date over with and it wouldn’t lead anywhere. Then you walked in. I was totally blown away. I wasn’t expecting someone like you. Wow, you were so beautiful. From the minute we said hello, it was all so easy. Everything clicked. You were so full of life. That had never happened to me before.”

  When the check came, Tom didn’t ask me to split the bill. He was chivalrous like that.

  Though the check was closed out, we came up with reasons not to leave, another story I needed to share, a joke he needed to tell. Maybe a cup of coffee. The restaurant workers wanted to throw us out so they could go home. I looked at my watch. We’d been talking for five hours.

  Driving home that night, after we’d lingered in the parking lot and reluctantly said goodbye, I completely missed my turnoff. I’d never gotten lost trying to find my own home before. Something special was happening. “That’s the guy I’m going to marry,” I told a close friend shortly after.

  As we saw more of each other I learned to appreciate his ability to work with people—he was so much better than I was. He’d developed his cooperative qualities from having played sports as a kid, I figured. I hadn’t been raised in that environment. My father was self-employed and there was no group give-and-take in my childhood. I also worked for myself and wasn’t used to accommodating others, but Tom showed me how. He was very Midwestern, a quality I found comforting.

  The one drawback was his taste in clothes: terrible. No-iron, poly-cotton dress shirts. A knit tie. The same ugly, light blue blazer every time. He was handsome and trim and could wear just about anything. Within a month or two of our first date, I managed to convince him to jettison the offending blazer, and then I took him shopping. After that, the clothes matched the man and he looked sharp.

  Our courtship was brief. I was thirty-eight when we married; he was forty-one. We were not committed to having children, but agreed that should we be lucky enough to get pregnant, we would be thrilled to start a family. Before I’d even met him, I’d picked out the name Emily to pay homage to my father, Manuel, who’d died five years earlier, so as to keep his memory alive. We named a favorite stuffed animal Leo the Lion, thinking, This is for Emily. I think we really wanted children but were afraid to admit how much.

  Almost immediately after we married, Tom left the public defender’s office and opened his own criminal defense practice in Beverly Hills. It goes without saying that we were doing well financially.

  Then I missed my period and suddenly we were also building a family.

  ONCE THE BABY came, we thought the rest of our lives would unfold the way my career had: on schedule, following a straightforward plan. Everybody else around me was birthing babies and resuming their pre-baby lives with no snags. They hired nannies and their careers continued to advance smoothly. I saw no disruption in their social lives, no curtailments of their pet projects or crimping of their travel plans. We’d be the same.

  The truth is, I knew nothing about children. I’d never even babysat as a teenager; I was completely ignorant, and I’d lived on my own for so long. I was anxious a lot during the pregnancy, worrying about whether my child would be physically handicapped. I often panicked, especially at night, and was unable to sleep. In an effort to ward off the anxiety, I slept with my head at the foot of the bed, walked around the house at night, or walked outside, sharing little of my anxieties with anyone but Tom, who was more than aware of my nocturnal restlessness. I reminded myself that no one in the family had been born with any kind of disability. There may have been issues with anxiety and depression, but they were manageable and not life altering.

  Of course, the early days of motherhood would not be perfect. Life, in the best circumstances, wasn’t without its challenges. We’d simply follow the same trajectory everyone else had. I expected to go back to work just a few weeks after Emily was born. As a sole practitioner, I had no one in the office to pick up the slack. We hired a nanny.

  Tom had similar expectations of family life. He’d watched his older brother and sister have kids, noted their joy and also seen the challenges. He was ready. “I wanted to be a great dad, to always be there for her. That was my biggest wish: to be as good a dad as I could be. Still, never in a million years did I think that we’d have a child with a disability and we’d have to deal with it.”

  Three weeks after her birth, I drove to work every day up and down Beverly Glen Boulevard, the winding canyon road that connects to the hills above Los Angeles where we lived. This was harder than I’d anticipated. I missed my baby daughter. I kept seeing Emmy’s face in front of me as I drove. Sometimes I cried. It was so hard. I kept pumping breast milk and did what I could, continuing to nurse her until she was ten months old. Still, being away from her during the day felt like my heart was being ripped from my chest.

  I comforted myself by remembering that our education, personal interests, and economic advantage assured that Tom and I would give Emily the biggest world possible. We were determined to share with her as many experiences as we could. We vowed to take her along with us on every trip, to show her this remarkable, huge life.

  ALL THE SIGNS pointed toward the fact Emily was fitting into our plan just perfectly. When Emmy was about six months, we traveled to Milwaukee with her to visit Tom’s family. At the airport, we rented a car, and as Tom loaded the trunk, I struggled to secure Emily’s infant car seat. It was a beautiful day and Emily sat quietly as I tried to secure the car seat buckle, my exasperation building.

  “Can I help you?” Tom asked, gripping the luggage, trying to assist.

  “I got it,” I snapped at him as my level of annoyance grew. I jiggled the connections, tightened the straps, but still couldn’t figure the damn thing out.

  Emily reached up from within the seat. Her eyes, always intent, had been following my every move. She was clearly aware of my irritation and decided to intervene. With her little hand, she simply and intentionally pressed down on the one button that needed to be released. That did it. Suddenly the car seat fit securely.

  How did she know that? She was only six months old.

  “Well, it’s clear you don’t need Mommy anymore, do you?” I joked, kissing her forehead.

  Still, I was astounded. She understood the mecha
nics of the car seat better than I did.

  We continued to be amazed by Emily during that trip. We drove down to Chicago looking to explore the museums and to shop on Michigan Avenue. In the Nordstrom elevator, Emily looked up from her stroller and studied the face of each person in the confined space. So intent was her focus that I was a bit startled when the woman standing next to me said, “Wow. Your child is so engaging.” Emily’s stare and fixated attention were so powerful, everyone wanted to say hi to her.

  It happened time and again. Later at the Tea Room at Marshall Field’s we had a similar experience. Emmy kept gazing at people, boring into them. “There’s a baby over there who’s just staring at me,” I overheard one woman tell her companion.

  Months later, back in California at the pier on Manhattan Beach, the same kind of comment: “Did you see that child? The way she looked at me. Unbelievable.” These instances of her concentrated visual engagement continued throughout her toddler years.

  EMILY DEVELOPED LARGELY according to expected timelines, as articulated by various experts from Dr. Spock to Heidi Murkoff, author of What to Expect When You’re Expecting. She rolled over on target at around four months, brought herself to a sitting position and stayed there by six months.

  At her first birthday party, she showed us a bit more of her personality. Like all children that age, she’d been doing some scooting, crawling, and cruising on furniture. That day, though, she made up her mind that it was time to walk. She didn’t toddle across the room, falling every few steps, waddling her way into our arms. She didn’t allow herself to be goaded into it by the promise of applause or a reward. She simply made up her mind, stood, and walked across the room as if she’d been doing it all her life. No big deal. She was ready and simply took off.

  I think of that now and connect it with the way she has approached so many things in her life. Once she makes up her mind, she goes from zero to sixty in the blink of an eye. It’s just part of who she is.

  Shortly after her first birthday, she was able to use single words and to call out letters and the numbers one through ten when prompted by Sesame Street. She fed her dolls and engaged in imaginative play. When she stood up that day and walked with such authority, it again confirmed our expectations: we were raising a special, incredible child.

  HOWEVER, A FEW other incidents raised questions.

  When Emmy was about four months, Tom was holding her and she grew stiff and wanted to twist out of his arms. She looked pained to be touched, to be held at all, her back rigid, her legs kicking. She screamed in anguish. Her discomfort at being embraced was clear and pointed. It scared Tom.

  “I thought all babies liked to cuddle,” he told me that night. “It didn’t seem right.”

  “They’re all individuals. Some like cuddling less than others,” I replied. Secretly, I worried, too. I’d noticed her pulling away from me, as well. Was something amiss? No, I told myself. All new parents have these thoughts. Nothing’s wrong.

  While Emily could stare with razor-sharp intensity, she wasn’t really making eye contact with people. There is a real difference between intently studying a person, and making actual eye contact. Emily didn’t make the connection. She stared boldly, in a way that might be considered rude in an older child or adult.

  There were other troubling signs. Emily hated whenever I left her for any amount of time. She became unusually traumatized when she realized I was leaving in the mornings to go to work. Yet as unhappy as she was to see me leave, she failed to greet me with joy when I came home at the end of the workday. She welcomed me home with a tantrum. Not really knowing whether she wanted me home or gone, I was left to guess and elected to shorten my workdays to spend more time with her. That improved things marginally. Still, whenever she heard the word “bye,” even when I was hanging up on a phone call, she became very upset. I kept wondering if something was wrong.

  2

  I knew I was not living up to their expectations for me. They expected me to speak. My frustration was huge. But not because I badly wanted to speak. At that time, I was just as happy to stay silent. I just felt sad that I wasn’t able to do what they wanted me to.

  Being young was at times a very confusing experience. Sometimes it felt like there were words and language spinning around me constantly. When I was very young I had difficulty focusing on anything that was not whatever my mind was currently hyperaware of.

  I spent a lot of time with my parents. I have always felt safest with them. They protected me fiercely. Even today, their smell brings me comfort as it did as a toddler. And not like a perfume smell, just themselves.

  When I was very little they always zipped around me. Like Dad has always taken the stairs two at a time. They have never been idle people. They were always busy with me in terms of going outside to play and going out to the park but also just as themselves. The things I remember most strongly are their faces. I remember they looked at me so often like they were memorizing every detail of me. Their faces have changed so little, I feel. In fact in general they have changed so little but they were far busier then. My mom would talk so fast. I knew even very young the calming balance Dad had.

  I have lived in the same house forever so I still imagine them here zipping all over the house. I remember them often dressed nicely and Mom clicking around in her heels. I loved that sound. We have always had dinner together, have always sat together to eat. The smells of dinner, even when I was very small, were comforting. I have always loved sweets. I loved ice cream. I loved Sesame Street. I loved my home, it was and still is my safe place.

  I think that my parents wanted me to have the opportunity to try everything. They taught me how to ride a bike and how to roller skate. I saw other children doing those things, so of course I felt good doing them. My parents are and were great teachers. They always talked to me normally. They constantly chatted with me, even if I couldn’t chat back. I believe that was very beneficial to me.

  They always celebrated me. Anything I learned was celebrated. Birthdays were always celebrated. For parties my mom always loved to dress me up. Mom was very stylish herself.

  When I was very little, I was mostly very happy. The thing that confused me most was language. It’s like I could not process words. I could not hold or direct my focus. It took longer for me to learn things because I could not break out of that unfocused, autistic brain.

  “Does your child have some hearing difficulty?” the woman teaching the music class asked me, trying to be polite. “Is it possible she’s deaf?”

  I was stunned. I hadn’t noticed anything amiss with her hearing. At home, she’d recognize the Barney theme song on the TV from three rooms away and come running.

  Like many new parents, we’d read that early exposure to music advances a child’s intellectual growth, so we’d signed her up for this class run by a professional violinist and her sister, also a musician. The sisters played different instruments for the kids, including drums and percussion instruments. The other children bopped their heads, or stood and swayed, or clapped their hands, interacting with the sounds. Emily didn’t react or respond to the music at all.

  What I should have noticed was how completely nonresponsive she was in that class, even when the cymbals were clanging and the drums pounding. The cacophony never bothered her in the least, which is probably why the teacher raised the issue. To this day, I don’t understand why Emily, who is hypersensitive to so many sounds, could sit with those harsh noises. I have been next to her in a car with the top down when a gang of motorcyclists roars past and she never flinches. If Tom coughs or sneezes, however, she reacts viscerally. There was something sensitive and different about her hearing.

  We decided to have her tested. A brain-stem assessment concluded that her senses were fully functional. Emily was not deaf.

  Other indicators that Emily might not be progressing developmentally emerged after her first birthday. Emily and I attended a Mommy and Me class hosted by a psychologist where I noticed the other
kids cuddling with their mothers, wanting closeness, snuggling on their laps. Emily was more independent, and actually, I was proud of her for it. The other children refused to leave their mothers’ space, tentative and a bit scared of the world. Not Emily. She was up and about, checking out the room, exploring, examining things. Look at the way she just does what she wants. She’s a strong girl who knows her own mind. I was pleased by what I viewed as her independence.

  THE CONTRADICTIONS CONTINUED to pile up. Tom took Emily to a Daddy and Me–type class at the Encino Community Center. The fathers and children were all gathered around colorful wooden blocks for building towers. Tom sat next to a man with his young son. The boy quickly built a tower, balancing the blue, yellow, and red blocks, one on top of the other, taking obvious joy in constructing the ever-changing configuration, laughing and smiling as he did so, pleasing his father.

  “Look, Em.” Tom held out a block. “You can put it like this.” He mimed the action.

  She didn’t care, didn’t want to hear what he was saying.

  Tom showed her how to start building a tower. “You place the block like this.”

  Emily didn’t respond.

  “Come on, Emily. Don’t you want to build a tower?” His voice became pleading.

  No matter what he did, he couldn’t get her engaged. She refused to look at the blocks, wouldn’t touch them. She was almost scared of them.

  “I was dying inside,” Tom said. “Just begging her to put something together. God, it was so hard to watch this other kid. I don’t know if it was shame or embarrassment, but when no one was looking, I quickly built a tower so I could pretend Emily had done it like the others.”

  Meanwhile, Emily was way behind in expressing herself with language, though she could count when prompted and could follow along saying letter names. She also screamed a lot.