I Have Been Buried Under Years of Dust Page 9

  Through hearing words, I hoped Emily would come to understand the rhythm and syncopation of language and then spontaneously one day might begin to talk. Honestly, I had not a clue that the words she heard were being stored away in her mind-computer, just waiting to spill out when she was ready to share her thoughts.

  When reading time was over and we put her to bed, though, that’s when some of the worst stress gripped us. Not every night, but three nights a week on average, after we tucked her in and Tom and I got settled, her shrieking and screaming began in earnest. I believed we should let her cry it out, as parents of that era were taught to do with young children learning to sleep on their own. Tom, however, disagreed. He was worried about brain damage. In moments of upset, Emily hit herself with the heel of her hand on her upper forehead. This happened so frequently that the area along her hairline had stopped growing hair. She developed a permanent red spot there.

  “When she hits herself, that’s what so upsets me,” Tom told me. “I was really concerned, still am, that she’s damaging herself. It’s pretty awful. I couldn’t let her do it.”

  When the meltdowns occurred, Tom went into her room and placed his hand over her forehead so that when she tried to strike herself, she ended up hitting his hand instead.

  I worried that this would only make her angrier. I could hear it: the more he tried to get in the middle of her self-harm, the more her screaming intensified. She was angry, and Tom’s interventions only made it worse. “Cut it out, Tom!”

  “I can’t let her keep hurting herself,” he hollered back, frustrated. Our two adult voices bellowing at each other joined with Emily’s howls of outrage. The house pulsed with raised voices, each one of us indignant and at odds with the others.

  Eventually, he wore Emily down and the screaming subsided. When he came back to our bedroom, my husband was bloodied from her scratching. We tended to his wounds. Short of removing her fingernails, we didn’t know how to stop Emily’s tendency to maul. Putting up with these nocturnal outbursts was exhausting.

  It was in moments like these that Tom and I recognized we really only had each other, and we were grateful for at least that. No family members ever offered to watch her. We had no trusted employees we could pay to carry the burden for a bit. It was too much to ask of friends. All we had was the constant drumbeat of Emily’s needs, which filled up the hours between work and sleep. We felt isolated from the larger community, and though we were in this together, Tom and I frequently felt adrift and alone. We weren’t original in this way. Ask other parents of special needs children: you simply do what you have to do. We weren’t superhuman and often felt crushed by the weight of what we carried.

  WITH OUR COMMITMENT to having Emily fully included, we moved her to our local school, Encino Elementary, to have her integrated into a neurotypical class. It was second grade. She would be the first autistic student ever to be included at that school.

  True to the pledge I’d made to myself at the autism conference, I was always in the classroom, helping in the school’s front office, getting to know the teachers and the principal, getting people to care about Emily. I started a Girl Scout troop to ensure she was included. I was the parent volunteer in the classroom, the vice president of the PTA. Whatever it took.

  With her aide, Emily participated daily in the regular academic life. I could tell she was learning to decode letters and words because she regularly brought me videotapes, wordlessly getting my attention to view them, having read the packaging to know that the subject interested her. She was also able to do some of the class arithmetic work using a method called TouchMath that Alicia had taught her. She wasn’t taking the tests and doing all the regular classroom activities, but on her own terms, she was progressing academically. She was fitting in, developing friendships; she was beloved by the teachers and learning to be socially appropriate.

  I liked being in the full-inclusion classes. I have always liked being around people that I could see as examples of how I wanted to be, people I could model my behavior on. I tread carefully here because I stand with my community. That said, I have always favored the company of non-autistic people. There’s a different feeling entirely being around neurotypical people because they give off less random energy compared with autistic people. And they offer more predictability, something that gives me comfort. I stand with my community, but I also know this preference is there.

  I must have stood out among my peers. I may not be able to speak, but I am always making random sounds. Plus, my body does things that people don’t expect. When something brings me joy, for instance, it can be so intense that I am filled by fits of laughter and I may move more erratically than normally.

  A lot of kids are pretty wild at that age and in some ways I fit in because of that. You would think that hearing all the chatting of the kids in the classroom would have overwhelmed me, but actually, I loved it.

  Some teachers pulled my parents into a meeting when I was in Kindergarten. I remember it clearly though Mom and Dad might not. The teachers were worried about my lack of verbal skills. They began to question everything about me. Like my age, maybe I was too young. Maybe I had hearing issues. Maybe I had some kind of birth injury my parents had hidden. They had this meeting with me present. I was super young and did not really understand, it only made sense later. But I remember my parents’ reaction. They looked gutted, like someone just told them I was not their child. Like all this was their fault. It made me feel so sad for them. I felt like I let them down when I thought about it years later.

  I made acquaintances in school. A lot of people knew me and I knew a lot of people. But if someone approached me, they’d start to talk. It was how people made connection. The fact I didn’t talk stopped me from making those strong connections. The kid who’d approached me would go away after a short time and I’d feel some relief because I couldn’t join the conversation.

  There was one girl who used to always come find me at recess.

  “Want to go swing?” she’d ask.

  Swinging was my favorite thing and I think it was hers, too. I loved that she’d come and ask me and we’d go and swing together. I was a happy child in elementary school.

  There was the playground at the school that I feared at first and yet I learned to love it. The playground was always a challenge to me. Yet, I just felt happiest learning on my terms and I felt I could do that on the playground.

  One day, I was with a group of kids on the playground. They had a big rubber ball and asked me right at the start of nutrition if I wanted to play kickball with them. Soon, though, they could tell I did not catch well. One of the girls began rolling the ball to me instead of kicking it and I could catch the ball that way. It worked! And I fit in.

  9

  “Have you ever thought about changing your practice?” The lawyer who’d represented us asked me this question out of the blue one day when Emily was in fourth grade. Up to this point, my law practice had focused on civil litigation and financial matters. Frankly, I was bored with it and tired of fighting for corporations. All I ever did was improve their bottom lines and move around decimal points for them.

  “I’ve never thought about it.” I was honest with her.

  “I think you should. I’d love to have you join my practice.”

  Though her question was completely unexpected, it could not have come at a better time. I’d become a fierce and relentless campaigner for Emily and those skills could help other children. It was crazy, but I basically sued our school district annually from the time Emily was in preschool through high school. Once I realized what the law promised her, and how little the school district was doing to make good on those promises, I went after them tooth and nail. I had a lot of experience by this point.

  “What do you think?” I asked Tom that night about the job shift.

  “You’d be so great at it. You care so much about the kids. And besides, we’d finally get you down here working with the real people.” He still teased me a
bout my corporate clients. Tom himself had also shifted in his career, going on to become a court commissioner—basically a judge, adjudicating cases in Los Angeles.

  WITHIN A YEAR, I shuttered my practice to join hers. In taking on that work, I came to realize the value of preschool teachers and their incredible perceptivity and astute evaluations of young children. I remembered the woman from the Magic Years and her statement that Emily didn’t know what was expected of her. She was so insightful. Preschool teachers have seen so many children. They notice when the behaviors are out of the norm. Working as an advocate for parents of special needs children, I represented many families. I would always ask during our initial meeting: “When did you first know there was an issue?” I’d often get a similar answer: “I didn’t notice until years later, but a preschool teacher once told me . . .” Preschool teachers tend to catch details that doctors, parents, and experts don’t catch until years later.

  It turns out that my experience with Emily was extremely valuable in helping these other families.

  “How do you know so much about this?” clients asked me. I told them about Emily. I never held back personal details. Emily and my clients all grew up together.

  I discovered I was a natural at representing these kids and their parents. I was never any less aggressive in my advocacy for a client than I had been for Emily. I changed children’s lives, as well as those of their parents and siblings. Sometimes, a small alteration, like an added service or a change of placement to a different school, can make a huge transformation in a child’s life.

  Recently, I received a note from a young woman.

  “You may not remember me, but you helped me in middle school. You made sure I got into the class I needed and everything got better after that. It changed my life. Now I’m good. I’m graduating high school this spring and going on to college. You helped me. Thank you.”

  I’ve received scores of letters, cards, and emails just like that. Apart from raising Emily, this legal work has been the most rewarding thing I’ve ever done.

  “WHAT DO YOU think about facilitated communication?” I asked Alicia Elliott in a conference on Emily’s progress when she was about eleven and Tom and I were still looking for solutions. I remembered the woman I’d first encountered at the Long Beach autism conference, Darlene Hanson, who’d had great success getting autistic kids to type to communicate. She might be able to help. I told Alicia what I remembered about Darlene’s client Sue Rubin.

  “Could Emily do the same?” I asked.

  Alicia shook her head. “Emily has verbal communicative intent,” she said, explaining that Emily clearly wanted to make herself known and was making strides to do so. Any other form of communication—sign language, facilitated communication—might impede her progress toward speech.

  “You still think that’s possible, that she’ll talk one day? After all this time?” I asked. I was losing hope.

  “I do. We wouldn’t want anything to interfere with that intent,” Alicia said.

  Of course we wouldn’t want that. Alicia must be right. We’d trusted her every step of the way. She’d always had Emily’s back. She was the expert. She must be right. If learning to type might interfere, I trusted her. I dropped my queries about FC.

  AS MIDDLE SCHOOL loomed, we needed to find yet another place for our daughter. On the recommendation of Emily’s fifth-grade teacher, but against the advice of all others who worked with Emily, we began considering alternative placements for middle school, including placement in a specialized academic setting known as a Non-Public School. I was worried that the bullying I had observed in elementary school would become impossible in middle school, a time notoriously challenging for all students, let alone those with special needs.

  TOM TOOK IT on to see if the Non-Public School was a viable option. “This wonderful teacher introduced herself to me and went over, in incredible detail, all the ways she’d be able to work with Emily,” Tom told me after attending an open house for a Non-Public School middle school, certified by the state to provide specialized educational services for students like Emily. “She was great. This is a perfect placement.”

  With that, the decision was made. With the support of the district, we abandoned our local public school in favor of this specialized setting. It was the opposite of the full inclusion we’d fought so hard for, yet we were excited. The future looked good with a stalwart educator in our corner.

  On the first day of sixth grade, however, when we arrived at Emily’s assigned classroom, we found a different teacher, one not at all as interested in working with Emily as the one Tom had met. Emily had been reassigned to a different class and no explanation given.

  “I was so angry,” Tom said. “Why didn’t they warn us about the change or prepare us somehow?”

  Her new teacher’s previous job had been as a shoe salesman. He was employed on an “emergency credential,” had zero special education experience, and had never even taught school before. We hired occupational and behavioral therapists who occasionally attended class with her, and they reported regularly how badly things were going, but we didn’t know where else to turn.

  We sent a privately retained behaviorist to the school to take a look at how things were going. While still in the school, unable to contain how upset she was, she called. “You need to remove Emily immediately. They don’t understand her and her abilities.” She was crying. “The teacher gives her the same jigsaw puzzle to do over and over again. It’s just wrong.”

  I asked the school to provide daily evidence of Emily’s academic work. Every day I received promises that they’d meet my request, but they never did. The final straw came halfway through seventh grade when I went in to observe her “science” class. The teacher put on a video of the Magic School Bus cartoon featuring Ms. Frizzle, who imparted the so-called lesson. That was it. I pretty much carried Emily out of the classroom that day, determined to move her to our local public middle school.

  “I CAN’T BELIEVE those people.” I came into the house, slamming down my briefcase on the entry table. “Why do we have to put up with such incompetence?” I’d just been to yet another IEP.

  Tom met me at the door. “Not good?”

  “Ineptitude! Imbeciles! Cretins! Boneheads! They want to screw us out of whatever we ask for.” I kicked off my shoes, railing about what I’d just faced, trying to get Emily placed as a fully included student in our local middle school. “I won’t have it.”

  Emily was upstairs, and though likely to overhear my outburst, I didn’t care. “They are nefarious know-nothings who have no business working in education. And I told them so. To their faces.” My words echoed off the walls.

  “Valerie . . .” Tom shook and then lowered his head. He often parroted my mom’s adage: You catch more flies with honey than vinegar. I didn’t want to catch any damn flies. I wanted my daughter educated. “We have to make nice with them. That’s the only way this is going to work.”

  “I am not going to make nice, Tom. We don’t have time for this crap. They’re not being nice in denying Emily what she needs.” I was fed up.

  Tom and I are different people and we have very different styles when it comes to working with others, differences that were exacerbated when dealing with school administrators. Tom is a team player, a negotiator. He’s really good at working with people and convincing them he likes them, even if he doesn’t.

  Early in our marriage, we attended a party together. A deputy district attorney, whom I knew he vehemently disliked, was there. Yet I saw him go up to her, chat with her, laugh with her, and then—I couldn’t believe it—he actually hugged her. He was a defense attorney. She was a prosecutor. They were basically enemies.

  “I thought you told me she was a bitch?” I whispered to him when he came back to my side of the room.

  “Oh, she is.” He laughed. “But I have to make nice. That’s how this whole thing works.”

  I, on the other hand, have never once in my life been able to be
anything but transparent in how I feel. If I dislike someone, trust me, they’ll know it. I have absolutely no ability to hide my feelings. That candidness, alas, did not earn me many friends in dealing with the Los Angeles Unified School District.

  These were difficult years, and I’m still astonished that we survived them. We were dealing with not just Emily and her limitations and behavioral issues—the nighttime screaming and hitting and scratching, which would tire out even the most saintly parent—but having to fight the school system on a regular basis on top of it. Not only did I have to sue the school district repeatedly to get her the services to which we she was legally entitled, but I was hated and reviled by administrators, teachers, school district personnel across the board for doing so.

  Every time I went to an IEP meeting, I was met with a roomful of people who clearly scorned me. Mostly I was the one who had to attend these meetings and reported back to Tom. Each time I had to face off with a handful of professionals who just wanted me to go away. In no time, I saw that they were all out to do as little as they could for Emily; they had bad intentions. That sounds harsh, but it was true. Their job was to save the school district as much money as possible. Mine was to get my daughter’s needs met. We battled.

  Each time, before I walked into the conference room for an IEP meeting, I had to put on my imaginary armor to deal with the eye-rolling, the scoffing, the shaking heads, the dismissive glances. After the meeting, I’d tell Tom what had transpired. He was always interested and supportive, but he wasn’t in the room with me, he wasn’t the one having to don the armor. He didn’t see the faces they made at me. He couldn’t defend or protect me from what was happening in the way he wanted to. It created a resentment I didn’t want to feel. I felt like I was overly burdened—caring for Emily, fighting for her rights with the school district, managing a household, practicing law, pursuing a social life, and maintaining my relationship with my husband. Some days, it was just too much.