I Have Been Buried Under Years of Dust Read online

  “This is the mouse. When you move it, it moves the cursor on the screen,” Tom explained to Emily when she was about six. He’d decided to teach her to use the computer but didn’t know where to begin. He didn’t expect much feedback, especially not verbal, but was confident they’d figure it out together.

  He started describing computers to her, hoping that something would register. If he could get her to understand how a mouse worked and simply move it within, say, a month, he’d be doing great. It would take longer, he was sure, to teach her to open a program and actually do what she wanted.

  They’d just sat down to work together in the dining room. I could hear the lesson begin.

  “You can move the cursor over the symbol you want. And then, if you press down on the mouse with your fingers, it makes a ‘click’ and that will open the program.”

  Soon I heard Tom laughing from where they were working. I went over to investigate. There was Emily, having commandeered the mouse from Tom, moving the cursor, clicking icons, opening programs. There was no question: she was smart.

  AS A SMALL child I showed her the basket in her room used as a clothes hamper.

  “When you take off your clothes, you put them in the basket.” I only had to tell her once. I have friends with kids in high school and college who still haven’t fully grasped that concept.

  I bought her outfits and showed her which tops went with which bottoms and how to match the colors. After matching the items a single time, from then on, she picked out her clothes and matched them on her own. Likewise, when I taught her how to wipe down a dish and load the dishwasher. It took very little instruction to get her to set the table at dinnertime.

  Despite her intelligence, we still had to adjust to her language limitations. While she couldn’t communicate in the ways we did, she became very good at expressing her likes and dislikes. A frown, a shake of the head, a simple yes or no communicated a lot, and her body language was pretty doggone clear about what she deemed acceptable.

  “I wish my wife could be as clear about her wants and needs as Emily is,” a friend joked.

  Still, we so wanted to know what she thought about, what she desired, what she felt about us and our little family, who she was inside. She remained separated from us, kept apart by this language barrier, able to share only the tiniest bit of herself with us. It saddened me, and I worried for her future.

  LIFE WENT ON, Emily grew and developed, and in regular, day-to-day ways, certain self-care requirements needed tending. The dentist, for one.

  When she was small, I learned about a dentist for special needs kids. Perfect. I made an appointment. I took Emily in and he had her sit in the chair.

  “You know, with these kids, their arms fly about when I’m doing my work. I can’t examine her properly that way.” He pulled out a straitjacket and attempted to put it on her.

  What the hell? I almost screamed. No one was going to put a damn straitjacket on my child! I was outraged. This was a dentist who billed himself as an expert with special needs children. Anyone with a straitjacket could terrify a child into getting her teeth cleaned, but at what cost to the child? The stigma surrounding autism was clearly alive and well. This incident showed me I’d been wise to keep her diagnosis to myself whenever possible. Let people know your child is autistic and this is what you got.

  I refused to let him treat her. As we left, I declined to pay for the appointment and saw the note he put in her file. “Mother uncooperative.” I didn’t care. That was not going to happen with my daughter.

  I called up my own dentist and told her the situation.

  “Bring her over,” she said.

  The first time I went to Dr. Suzan Vigil’s office with Emily, she was about five or six. To show Emily what would happen, I reclined myself on the dental chair while Emily watched.

  “Open your mouth, Valerie, and I’ll count and look at your teeth, clean a few of them,” Dr. Suzan instructed me.

  Emily watched and saw that the experience was okay; I was not being harmed. That was enough for one day.

  The next appointment, three months later, Emily lay in the chair with me, her little body positioned on top of my own.

  “Open your mouth, Emily, and I’ll count your teeth like we did with your mom last time. I’ll be touching your teeth.” She did so with the metal probe. “Let’s try one together so you can see what it feels like.” The dentist was gentle and careful and explained absolutely everything.

  Emily looked up at me to make sure it was okay and then laid her head back on my chest and opened her mouth.

  We started off slowly and allowed the dental ministrations to grow incrementally.

  “I’m cleaning a tooth here.”

  “I’m tapping one of your back teeth, now.”

  We saw the dentist every three months to acclimate her.

  Now, at the dentist’s office, when Emily’s name is called, she gets up from the waiting room by herself and follows the assistant into the office and settles herself in the chair, opening her mouth, waiting for the dentist to do her work, all on her own. Time, patience, and understanding, along with letting her know what’s happening, makes such a huge difference.

  Having her blood drawn was another ordeal: screams, fighting back, full-on resistance. Until the day at Children’s Hospital when she made known her preference. We were reasoning with her, trying to get her to straighten her arm so that the blood could be drawn from the crook of her elbow. She pointed to her inner wrist.

  “You’d prefer they take the blood from there?” I asked, confused.

  “Yes.”

  The phlebotomist agreed, and in no time Emily completely cooperated. She let them take the blood from her with no screams or tantrums.

  What we saw time and again was that Emily was smart. If we could explain to her what was needed and get her to understand, we could make huge strides.

  We decided early on that we weren’t going to cave in to the diagnosis. My mother, like the preschool director, always said, “Children need to know what’s expected of them.” They were both right. Thus, we set standards for Emily and decided she would meet them. For instance, we assigned her daily chores from the time she was small, like helping to set or clear the dinner table, and taught her to eat with silverware, to put a napkin on her lap, to have manners. I saw this as my responsibility, to make sure she practiced good hygiene and knew how to dress herself. She would conduct herself with dignity in this world, I would see to it. And she did.

  We also exposed Emily to as many social and cultural opportunities as we could. Our mantra was the worst that could happen was it would not work out. In this spirit, we traveled with her during spring and summer school vacations back East, as well as to Canada and the Northwest. We took her to Broadway shows. On those occasions when the activities on these trips overwhelmed her, we simply scaled back; if it meant leaving a show before it was over, so be it. We simply wanted her to take in and experience and enjoy what she could. We wanted it to work for the three of us.

  BY THE TIME Emily hit first grade, she was “mainstreamed” at a public school, attending special ed classes for part of the day and joining a neurotypical class for the nonacademic parts of the curriculum. My office was nearby so I could stop in and volunteer as much as possible.

  “Where’s Emily?” I asked when I came to help one day.

  “She’s in with Mrs. Samuels,” the teacher told me, indicating the general education second-grade class. “They’re doing a special visit with reptiles.”

  I wandered through the school hallway, looking for her.

  Through the IEP process and with the assistance of our attorney, the district had agreed to place her in this special ed class with a one-on-one aide. I didn’t fully appreciate or understand the difference between mainstreaming and full inclusion at the time, but the idea that she’d join her neurotypical classmates in activities had been highly appealing. By having children that she might emulate in her daily experience, I hop
ed that she’d learn from them and develop her abilities.*

  What sounded good as a concept, though, was not working out in the real world as I’d hoped. When Emily joined in the general education classroom, she wasn’t really part of the class. The teacher appeared to be afraid of Emily and went to great lengths to keep her separate from the other kids. That separation pained me.

  Today, though, she was with the general education kids. She was participating in the reptile visit. Great. She was joining in.

  I opened the door to Mrs. Samuels’s classroom, and almost screamed. There was Emily, in the middle of a group of kids, a massive python wrapped around her. The snake wound from her upper legs, over her waist and along her arms, all but covering her chest. A few inches more and it might be wrapped around her neck. I nearly lost it. Whose idea was it to have a seven-year-old wrapped up by a giant python?

  My panic was overblown, but it wasn’t because of Emily’s reaction. She was happy as a clam. She’s always liked snakes, and since many autistic individuals enjoy the feeling of being squeezed, maybe it felt good to her.* In the moment, though, I was alarmed. A python hug didn’t seem like a safe activity. I intervened to get her out of the snake’s clutches as soon as possible.

  Like the snake, the idea of “mainstreaming” wasn’t such a good idea, either.

  What I saw during the course of the first grade was that Emily was treated as an interloper in the general education class, a visitor, someone tolerated but never fully welcomed. Mainstreaming only taunted her with what was possible, seeing the kids in the general education classroom learning and laughing and growing together. With mainstreaming, she’d forever be on the other side of a smudged window, looking in on that class and knowing she was excluded.

  Meanwhile, the “academics” in her special education class, which took up the majority of the day, were busywork, and as more kids acted out, Emily learned that that misbehavior was acceptable, even expected in school.

  AS THE PARENT of a child with special needs, one of the hardest things I’ve ever had to endure is just how mean people can be. I don’t know why we as humans feel the need to step on or push down those who already face monumental challenges, but being made the butt of jokes, ostracized, and mocked is clearly part of the experience for many with autism and other developmental challenges. I wish it wasn’t true, but it is.

  Still, for every harsh word and cruel gesture I saw Emily receive and bounce back from, instances of surprising kindnesses and spontaneous generosity from people who knew her or were just passing by regularly floored me.

  In preschool, one little boy sent her a note telling her that she was his best friend and he loved her. She still has it. A small thing, but heartfelt and lovely. That note clearly made Emily feel good.

  In that “mainstreamed” first-grade class, when school let out for the Thanksgiving break, Emily came home and opened her hand to show me a rubbery plastic ball filled with water, trailing a length of rubber string. The kids called it a yo-yo ball. She also held bunched-up wrapping paper and a card with a scrawled message.

  “Have a happy Thanksgiving, Emily,” a young girl’s letters spelled out. “You’re my best friend. Love, Tracy.”

  Tracy was a Black girl who’d really taken a shine to Emily. Whenever I came to pick up Emily after school, she’d see me and ask, “Do you have anything for me, Mrs. Grodin?” I’d produce some candy or chocolate, whatever might be in my pocket. That little yo-yo ball gift—it cost about a buck—conveyed such heart. The kids who’d experienced stigmatization or hardship themselves were the ones who recognized Emily’s challenges and gave her support.

  A number of her classmates in her general education classroom had been bused in from Central Los Angeles. Mostly African American or Hispanic kids, they were often from a lower socioeconomic bracket than the kids in our upper-middle-class, predominantly white neighborhood. You would think that children of privilege, the local kids whose families didn’t have pressure on them financially, would have had the wherewithal to be generous with their peers, particularly the ones who struggle. You’d also think that those parents would have taught their children to be kind to people with disabilities and who face extraordinary challenges. That wasn’t the case.

  Clearly, there’s something about wealth and entitlement that makes some people think they are exempt from the struggles of life, that they are somehow superior to others who don’t have it so easy because universally, it was the bused-in kids, the kids who came from no privilege and whose families lived in poverty, who were nice and generous with Emily. They knew what it was like to struggle and they felt a kinship with Emily.

  Those kids were kind to her. They wrote her sweet notes, gave her gifts, and wanted to play on the swings with her during recess and sat with her in class. These small human kindnesses added up.

  Contrast that with the way Emily was treated by the kids in the neighborhood and the difference was appalling. People often measure intelligence by what you say, and when you’re unable to speak, they make the automatic assumptions that you’re stupid and have nothing worthwhile to add, and thus they believe they’re free to treat you poorly. It’s time we move beyond that limited, ignorant thinking.

  The local kids, almost every one of them, made fun of Emily. Little sniggers, laughing behind a hand, fingers pointed, mocking the sounds she made, her failed attempts at speech, and her sometimes uncoordinated movements. It went on all around her, though she often didn’t notice—or if she did, she pretended otherwise.

  Emily attended an afterschool gymnastics program. To accommodate the tumbling, the doors to the classrooms all along the school hallway were closed so the kids could have the length of the hallway to run and do cartwheels. Emily experienced challenges with some gross motor skills and she couldn’t do everything the neurotypical kids could in the gymnastics class, but she enjoyed herself.

  I arrived after the class had started. I was still outside and noticed kids standing in the breezeway at the window, peering in. I had a sick feeling. I walked closer to see what had them so enthralled. I shaded my eyes with my hand to see into the hallway and blanched. They were all watching Emily, focused on her, pointing at her, ridiculing and laughing at her.

  I don’t know if Emily saw or noticed. I prayed that she didn’t. She didn’t need one more person, particularly any of her school peers, making fun of her. Still, I saw what they did and I was furious.

  “Please go away,” I said, trying so hard to keep a civil tongue. They were only first-grade children, I know. You would think they’d have known better, that their parents would have taught them to be more kind.

  AS HER FIRST-GRADE school year in the mainstream class wound down, we received a letter from the special education director of the Los Angeles Unified School District (LAUSD). “The school your child is enrolled in is not your school of residence,” the letter said, all but reprimanding us for having sought out the opportunity. The letter’s intent was obvious. Emily was being asked to leave.

  I TRIED TO keep my spirits up by viewing Emily’s circumstance as a problem to be solved. I’ve always liked puzzles and games as they all involve problem-solving strategies. I sought out information that would help me with this one. I proceeded on that theory and went to every conference possible, attended seminars, lectures, impromptu meetings, parent meetings, and District meetings.

  I learned of a conference sponsored by the Autism Society of Greater Long Beach and took the day off from work to attend, and for the second time in a few short years encountered the idea of facilitated communication (FC). I’d first been introduced to FC “typers” a few years earlier at the Burbank office of the Autism Society of Los Angeles. They’d been mostly older adults, and though I’d been mildly interested in the idea, it hadn’t really stuck with me. Later, I watched the 2011 feature-length documentary Wretches & Jabberers, which follows two middle-aged men who learned to type in later life and how their life experiences opened up dramatically after acquiring
that ability.

  At the Long Beach conference, speech pathologist Darlene Hanson gave a presentation that focused on one of her students, Sue Rubin, a young woman of college age. Using FC, Darlene had taught Sue to communicate via typing on a small device called an AlphaSmart. The idea flitted in and out of my brain, planting the seed. Where, I wondered, did the autistic person get the language to draw from in order to type? I also attended a presentation by a woman from the Whittier school district. Her words advocating for full inclusion in neurotypical classrooms resonated with me and guided me.

  “When you’re included,” she said, “your child is included.”

  I was determined that both Emily and I would be fully integrated in the next school we moved her to.

  “Give them a reason to care about your child,” the speaker said. I took her words to heart.

  I could no longer send my child to school and trust the educational professionals to bring the same level of care and concern I would bring. I would have to get myself into her classroom, onto the campus, into the day-to-day life of the school if I wanted to be sure Emily found her way. Everyone in the new school would know my face and therefore know Emily. I would compel them to care about her.

  I’d once read a book by Oliver Sacks about a child with neurological challenges he’d worked with. In describing the child, he’d written something like “I don’t remember the child so much, but I do remember the mother.”

  I was going to be that mother.

  AS I LOOKED for ways to implement that plan, we still didn’t know if anything we were doing was helping Emily, but we did know she treasured our reading time together. Whenever we opened a book, she settled down and paid attention. She sat on the couch next to us and appeared to follow along, though we could never be sure how much she was absorbing. Maybe she just liked the sounds of our voices. Maybe the words simply flowed over her and never made contact. We didn’t know.

  Reading became the key activity to fill our evenings. We read to her all forms of literature—newspapers, novels, thrillers, poetry. If it was on a piece of paper, we read it, often until we were hoarse.