I Have Been Buried Under Years of Dust Page 5

  AS EMILY NEARED kindergarten age, I visited countless schools to examine the opportunities. I still didn’t know which path to choose. I wanted her in a regular classroom if possible. Meanwhile, the hours upon hours of therapy with Doreen’s behavioral team frustrated me. The pace of change, which had always been glacial, had slowed to a halt. Yes, there was a little progress—she could look at us and point to the color green; she was able to resist walking on her toes most of the time. No matter what those data sheets might demonstrate, though, it was obvious to me that behavioral therapy was no longer having the intended effect. As far as I was concerned, she had made no progress with speech and her social interactions remained extremely challenged.

  I looked around for additional modalities. I briefly tried speech therapy, only to find the therapist more concerned about me—“You need to learn to take better care of yourself, Valerie”—than helping Emily communicate. Of course I was a wreck. The number of hours I spent working with the behaviorists, finding preschools for Emily, dealing with her tantrums, looking into formal school options, on top of my full-time legal practice, had worn me out.

  My quest for school options took me all over the county of Los Angeles. I heard of a school in Pasadena, Villa Esperanza, some thirty miles from our home, that was being raved about. Even though it was so far away, if it worked for Emily, I was all in. I was very surprised to find on the day of the tour that there were many parents in attendance from the Encino area. Everyone was looking for the perfect fit!

  Speech pathologist Alicia Elliott, in her fifties with short dark hair, radiated such caring and kindness, it almost knocked me back when I first met her at Villa Esperanza. She was soft-spoken, very warm. After years of the behaviorist’s dispassion, this feeling of kindheartedness and palpable concern was magnetic. The minute Alicia started talking about her work with autistic children, I was hooked. Not only was she enthusiastic and sincere, she’d had success with so many types of kids. I felt how much she cared by the way she described her clients. She inspired me.

  While the school she worked at had its appeal, I quickly saw it wasn’t a good option for Emily, particularly given the distance we’d have to travel. Still, Alicia’s presence and expertise stuck with me. I took her card and slipped it into my purse, thinking that one day I would need it.

  EMILY’S TENURE AT the Montessori preschool, meanwhile, was coming to an end. A few days before graduation, the two women who ran the program pulled Tom and me aside.

  “We don’t think it’s a good idea for you to bring Emily to graduation. With her noises, her yelling, you know, it might disrupt the day for the rest of the kids.”

  “But—” we protested.

  “Please don’t bring her.”

  I was furious. Emily had finally found her place at a school and had felt welcomed. She’d worked to graduate like the others. She was a part of the class and deserved her moment in the sun. I didn’t care what they thought, I would bring Emily. I wouldn’t put her up front with the others, wouldn’t allow her screaming or behaviors to ruin the day, but I wanted her there.

  This was also likely the moment I decided I was not going to sugarcoat things; I was not going to cower or kowtow to those who did not support what I was seeking for my daughter. I would do my best to be cordial, but I was tired of the pushback. I was ready to be aggressive in pursuing educational opportunities that others were intent on denying her. If making enemies was what it took, then so be it. Emily’s life counted.

  ON THE DAY of the preschool graduation everyone gathered in an outside area with hay bales, sawdust, and a split-rail fence. All the parents had their video cameras whizzing; the kids were dressed up. The school was located in a section of Tarzana zoned for horses. One of the families supplied a pony and most of the kids took turns riding the pony and squealing.

  Tom and I showed up with Emily and we kept to the back of the crowd. Twenty or so of Emily’s classmates attended with their parents, siblings, and grandparents to cheer them on. A ceremony commenced with the kids wearing construction-paper mortarboards, receiving little pretend diplomas. I was worried Emily would start screaming and disrupt things, nervous that she’d draw unwanted attention. This was an act of defiance on my part, being in a place they had specifically asked us not to be. Frankly, I’m still a little ashamed of myself that I didn’t more vigorously advocate for her, that I only protested in this small way. Still, I didn’t want to shoot ourselves in the foot. This had been the only preschool that had accepted her, and they’d been nice.

  The day unfolded; Emily didn’t disrupt anything. Her name wasn’t called out and she didn’t receive a diploma, but she was present and we congratulated our daughter on completing preschool. It was on that day that my advocacy was born.

  A FEW WEEKS later, I awoke at 3:00 a.m., unable to sleep. This happened a lot.

  I was in a state of chronic anxiety. Every morning, I woke not knowing which child I would greet. Some days Emily was a joy to be around, inquisitive, engaged, cheerful. Other days, she screamed and cried, hit herself and scratched us from morning until night over upsets we could neither predict nor fully mitigate. This stress rubbed off. Whenever Emily got upset, Tom and I moved into shut-down mode. We did only what had to be done to move through the hours until we could finally sleep. When she was happy, though, we were great. You could take our temperature, as individuals and as a couple, by Emily’s mood.

  This night, I woke fretting, mulling over how to solve any number of the problems we were facing. I worried if I’d signed her up with the right therapies and with the right practitioners. Perhaps there were interventions I hadn’t yet explored. I was concerned that my law practice was suffering with my attention so splintered. My brain ran through them all, obsessing.

  My quest on Emily’s behalf had already taken me across the whole of Los Angeles County, to seminars, schools, lectures, and presentations. This particular night, as my mental search engine powered through options, I remembered the speech therapist I’d met at Villa Esperanza, Alicia Elliott. Suddenly, she was like a bright light in a dark tunnel. I jumped out of bed, found my purse and dug through it, rummaging for the card I’d shoved into it months ago. I held it in my hand, convinced this was what we needed to do. We’d hire Alicia Elliott. Privately, not through Villa Esperanza. That would do it. I woke up Tom to tell him my brainstorm.

  “Go back to sleep, Valerie. We’ll talk about it later.”

  The next morning, I felt a spark of optimism that had been missing for far too long. I finally had the answer.

  WHEN I RAISED the idea with Tom the next day, though, his response was lukewarm. The dynamic between us often put us on opposite sides. I was always looking for something new to try and see if it worked, while he was always cautious, wanting to follow the tried-and-true path. Through all the weariness, we fought a lot. Still, I was convinced for the first time in ages that I was on the right path. At that point, Tom hadn’t met Alicia. If he only met her, he’d feel her magnetism, he’d see it my way. I was certain.

  I’d been in contact with her and she’d reassured me she had time to work with Emily.

  THE NEXT TIME Tom and I met with Doreen for an update meeting, I brought up my concerns.

  “I told you,” Doreen said, “we will add in the speech therapy with my own therapists. We can do all that. There’s no need to bring in someone else.”

  “I don’t think the current program is working.”

  “That’s because she needs even more hours. So far, we’ve been working with her, let’s see . . .” She consulted her notes. “Twenty-five hours a week. As you pointed out, she’s not improving. Clearly, the time we’ve allotted is not sufficient. We need to increase it.”

  “Increase it?” I was flabbergasted. Emily hated every moment of the behavioral therapy. I didn’t want to inflict yet more on her.

  “She needs seventy hours,” Doreen said.

  “That’s crazy. She’s a child. She needs a life.”

 
Even Tom was taken aback. He looked pained.

  “That kind of intensity is what she needs,” Doreen continued. “Better yet, she needs someone to be with her twenty-four/seven to talk to her, to direct her.”

  “She needs more than behavior modification,” I argued. “She needs to learn to communicate.”

  “Who besides us is going to be able to help her in this intensive way?”

  “Alicia Elliott.”

  “No, she won’t. She won’t be able to give her the kinds of hours she needs.”

  “I’ve spoken with her. She will.”

  Doreen was not happy. “What we’re doing is what Emily needs. And here you are, looking to replace these therapies? She needs someone to be talking with her, working with her every waking moment of her life.”

  I felt scolded but determined. We left that meeting with no resolution. I was exasperated.

  I TOOK UP the argument baton with Tom later that night. “We need to move her to Alicia Elliott. This is the best option.”

  “Why now, when we have all this set up, after all the time and energy we’ve invested?” He, too, was deflated and frustrated, but also under Doreen’s sway, as though he had chosen her over me. It made me mad.

  “Because it’s not helping her. Do you see her getting any closer to speaking to us? Do you see her improving any more? Because I don’t.”

  “Maybe she’s not able to.”

  “How do we know that? We haven’t given this a try.”

  “What we have in place is good. Let’s not fix things that aren’t broken. We’re making progress. I’m just as frustrated as you. Still, changing course now doesn’t makes sense.”

  “Doreen said she needed seventy hours a week. Did you hear her? That’s insane.”

  Tom agreed. “We’re already on behavior overload. Still . . . I don’t know about this.”

  “Well, I do know.” I had reached my limit. In my bones I knew that Alicia was the way we needed to go. I was ready to stake everything on that knowledge, even my marriage.

  “Alicia Elliott can give Emily what she needs,” I said. “The timing is perfect. Since it’s summer, many of her regular clients have relinquished their spots. She can make room for Emily.”

  “The behavioral therapy is what Dr. Sigman recommended,” Tom countered. “Why can’t we just see it through?”

  “It’s been three years!” I was now shouting. “Besides, Alicia’s been successful with other autistic kids. She’s moved them toward communication.”

  I worked myself into a frenzy. I was so upset and concerned. In those days, I was in tears all the time. I wasn’t completely irrational, I know, but I wasn’t the most reasonable person on the planet, either. I can be very headstrong when I set my mind to something, not leaving much room to negotiate. The skills that served me well as an attorney didn’t exactly make me easy to live with.

  “Say what you want, Tom, I’m doing this.”

  The truth was, I was obsessed with Emily, with everything about her, and in that moment, I wanted Tom to simply say, Great. Let’s do it. I was baiting him, trying to get his attention, desperately trying to wrest a different response from him. I wasn’t so much frustrated with him as I was with the problem, but I needed proof he was fully on my side. I wasn’t being fair; I can see that now. Still, I demanded his full-throated affirmation and nothing short of that. When he wavered, I gave him an ultimatum.

  “Either we make this change, or I’m taking Emily and leaving you.”

  My parents read to me all the time, always before bed but at other times, too, like if we were waiting at a doctor’s office or there was a quiet patch in the day. Mom or Dad would pull me close and read very clearly, following along with a finger on each of the words. Mom read in a distinct voice and always picked age-appropriate stories. She didn’t always read the same one book over and over again. Sometimes I would push her to stop and she’d tell me how important it was.

  Being read to was a beautiful comfort first, and something of a tool second. It contributed greatly to my writing but also to listening and receiving information. It gave me long bursts of material to focus on. I was able to hear the stories again, which taught me the significance of a story, that they are good more than once and meant to be revisited.

  I can remember the books’ smells. All books have a smell. Different books have different smells. Some books I liked just for the smell.

  There was a blue book with stars and the night sky that I’d ask for over and over. I’d go get the book and hand it to Mom. I loved that book. As I got older, I wanted to hear stories about kids growing up in different places or of a different race, kids experiencing struggles I could not know. Plus poetry. I think I favored poetry even early on.

  Language always was interesting to me, often even more so than the story. Sometimes, the story was already known to me, but I would pay attention because I liked the language. I learned the way to work words around. For example, rhymes or word choices would be what captivated me more than the actual story.

  There are special words, I discovered. The word “spectacular,” for instance, has always been a dance in my ears. And I love to hear words that shouldn’t rhyme, but then they do.

  All those years, I was rearranging words in my head. I would hear the words in my head even if I couldn’t say them.

  6

  Back when Emily was diagnosed at age two, I had immediately started my research to understand what we were dealing with, still convinced that with a forceful effort to interrupt the disorder, we’d have Emily back on track by the time she started kindergarten. We’d throw all the time and money needed to change the trajectory of this disorder and we’d simply make it go away. I can see now that was magical thinking. Over the two and a half decades I’ve spent learning about autism and living with Emily, my thinking and understanding about autism have evolved.

  Initially, we were told that autism was a disorder of the central nervous system, which meant, essentially, that all aspects of her body were impacted. The National Institute of Mental Health calls autism spectrum disorder (ASD) “a developmental disorder that affects communication and behavior.” Although autism can be diagnosed at any age, it is said to be a “developmental disorder” because symptoms generally appear in the first two years of life. When Emily was diagnosed, autism was characterized as a spectrum disorder as there were so many variants, from those who were severely impacted to those who were less so.

  In order to diagnose Emily, doctors simply observed her. Though the diagnosis was based on the criteria laid out in the Diagnostic and Statistical Manual of Mental Health Disorders, none of the doctors we consulted at that time mentioned that volume. The DSM-5, the current iteration, maintains the breakdown of eligibility based on communication and behavioral deficits, but parses the basis for eligibility in a manner different from the version of the DSM in play in 1993.

  I don’t recall that any kind of standardized test was ever used to assess Emily, even when she saw Dr. John Menkes, well known for his definitive work, Child Neurology. While observation is still the main basis for diagnosing, standardized tests are now routinely used.

  In many ways, we were then in the Dark Ages when it comes to understanding this disorder. (As far as I’m concerned, we’re still in the Dark Ages with this disability, but that’s another story.) Since her diagnosis, a lot has changed. Still, even with all the reading I’ve done and the advances in understanding that have come along, it’s clear to me that the initial information we were provided was correct. In our experience, autism came down to issues with the central nervous system, and the best way to diagnose and characterize the condition was through noting disturbances with the motor functions—impairment to speech, social interaction, and eye contact.

  The Centers for Disease Control and Prevention (CDC) reports that people with ASD often have problems with social, emotional, and communication skills. They might repeat certain behaviors and might not want change in their daily activities
. Many with ASD also have different ways of learning, paying attention, or reacting to things. Signs of ASD begin during early childhood and typically last throughout a person’s life. Children or adults with ASD might:

  not point at objects to show interest (for example, not point at an airplane flying over)

  not look at objects when another person points at them

  have trouble relating to others or not have an interest in other people at all

  avoid eye contact and want to be alone

  have trouble understanding other people’s feelings or talking about their own feelings

  prefer not to be held or cuddled, or might cuddle only when they want to

  appear to be unaware when people talk to them, but respond to other sounds

  be very interested in people, but not know how to talk, play, or relate to them

  repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language

  have trouble expressing their needs using typical words or motions

  not play “pretend” games (for example, not pretend to “feed” a doll)

  repeat actions over and over again

  have trouble adapting when a routine changes

  have unusual reactions to the way things smell, taste, look, feel, or sound

  lose skills they once had (for example, stop saying words they were using)

  As I pointed out earlier, the signs of autism we observed in Emily included the loss of and/or failure to develop speech, babbling, and social skills. Her beginning efforts at speech soon evaporated—sounding out the “B” in the Burger King sign; or saying to Tom, “I go play”—as did her eye contact with us.

  Like many children with autism, she also engaged in repetitive behaviors like flapping her hands, rocking, or spinning, or making unusual sounds constantly. These are often referred to as “self-stimulatory behaviors” or “stims.” Some believe that stims satisfy a sensory need for the individual.