I Have Been Buried Under Years of Dust

by Valerie Gilpeer

  Every so often, when Emily’s typing slowed or stopped, Lindsey prompted her verbally. “What do you think about that? Can you tell me more?” She also provided emotional support and encouragement.

  Most of the time, Emily did tell us more.

  I WOKE UP in the middle of the night regularly, perplexed by what was happening. I still wasn’t sure it was real, even with Dr. Wolf’s assurances. Tom questioned it, too.

  “Is this really happening?” I asked

  “I think so.”

  “I’m scared to believe.”

  “Me, too.”

  We could see the change in Emily’s demeanor; she was clearly happier. The meltdowns weren’t gone, but they were becoming less severe and much less frequent.

  There was no doubt that the voice we were hearing was Emily’s, but still, Tom and I had uncertainties and worried I might have convinced myself to believe in a delusion.

  Tom’s uncertainties had begun waning during the times he’d watched Emily type. He was mostly retired at this time and able to be around during many of the sessions with Lindsey.

  “On the third or fourth time Emily typed with Lindsey,” Tom recalled, “Emily was telling her about having attended Shabbat in the Park, what we’d done over the weekend. After the session, Lindsey asked me, ‘What’s Shabbat?’ I knew, then, that the words could only be Emily’s. Lindsey didn’t even know what Shabbat was.”

  BEFORE HER BREAKTHROUGH, Emily had met Brendan at an end-of-summer party for the participants in her Saturday dance class; he was a friend of one of her classmates and a few years older. At their first meeting, he’d walked around the room staring at her, following her, clearly smitten. He later invited her to attend his birthday celebration. It was sweet and I assumed she’d have a good time at the party.

  However, when we picked her up, she got in the car and started screaming. I wondered what had happened. Thankfully, she could now tell us.

  “What’s going on?” Lindsey queried Emily the next day.

  I am having screaming fits because my best is not enough. I will not be able to ever be seen as an intelligent person.

  “So, you went to a party . . . ?”

  I don’t want to go to parties like that ever again. I hate getting so worked up.

  Tom and I left the room to give the girls privacy. Soon, though, Lindsey called us back in.

  “I asked Emily to type again what she just told me.”

  Emily bent over the iPad. Can you please come back to my session? I like having you in the room so we can talk.

  I was touched that she wanted to share even the difficult parts with us. Tom and I sat at the dining room table, Emily and Lindsey’s new working spot where the iPad could be propped up.

  I want to say that my screaming is my only way to get my frustrating feelings to come to the surface.

  “I’m sorry the party upset you,” I said. “I thought you’d enjoy the social outing.”

  I am thankful for you wanting me to be social but I think I need a different crowd.

  “What about dance or tennis?” I offered.

  I am able to enjoy all my activities a lot but too much of the time people act like I am too stupid to be doing anything else. I really want to be the strong silent type but I am just me. Please tell me it gets easier with communication.

  “I love sitting across the table and talking to you,” I said, feeling my throat tighten. “Do you know that?”

  Too often we don’t get to talk because I don’t have speech. Let’s keep working on that.

  I left that session with profound hope. Emily wanted to share her life with us in a meaningful and intimate way. Later, we figured out that being with a group of autistic people often made Emily upset because she wanted to be seen as more neurotypical and felt limited by association with that community. Her attitudes about this changed over time, and she has since embraced her autistic friends more fully, but initially, I think, she wanted to break as free from the autism as possible. She’d felt hemmed in by the others at that party, continually reminded by their presence of her own differences.

  WHEN THERE WAS no set topic for discussion, Lindsey read articles and engaged Emily in questions. More often, though, Emily now directed the conversations. Some of her messages concerned daily human interactions, how she was feeling on a given day, or telling Lindsey what her weekend had been like. One day, Emily let us know she didn’t care for the voice on her iPad.

  Let’s talk about something Apple could do to help someone like me by not making the iPad sound so robotic.

  To know the voice did not give her pleasure was, for us, monumental. For two and a half decades we’d had to guess what Emily liked and didn’t like. Sometimes her refusal to do something appeared like straight-up obstinance. I remember when she was in preschool and didn’t want to eat the Ritz crackers at snack with the other kids. I wanted her to be like all the other kids and eat the crackers. Now that she could communicate, she could add nuance and clarity. It turned out that she simply disliked Ritz crackers. If the school had offered her another kind of cracker, she would have gladly eaten them. At the time, I thought she was just being difficult, that it was her autism I was seeing in that refusal, and it so disheartened me. To learn that she simply hated Ritz crackers made such sense. Likewise, to now find out that, like the crackers, she didn’t care for the robotic voice: great. Let’s bring on a new voice. We were starting to finally know what our daughter was genuinely thinking and who she was. We found an application with differing voices that would read her words aloud. She found one she liked.

  ONE MORNING, LINDSEY asked Emily if she’d had a good night’s sleep.

  I often go right into a dream where I am a talking person. The last part of it is always the same. I am ordering food at a totally cool restaurant, everything on the menu. Then I wake up and I’m still very much stuck in a body that does not work that way.

  Hearing the iPad speak those words aloud, I felt pinned in place by sadness. We shared a similar grief. Both Tom and I had had the same recurring dream of Emily being able to speak. It was always so vivid. Even my assistant at work had told me how she’d also dreamed of Emily speaking. The reality was that she’d likely never “speak” in the way she did in all our dreams. She could enunciate a few words but much of what she might try to tell us verbally was not understandable, a frustration to all of us. Though this realization of what she’d likely never be able to do was poignant, it didn’t diminish how world-shattering her typed words were—for all of us.

  AT ONE OF their sessions, Lindsey asked what Emily thought about her leap forward with typing. How had it happened?

  I think it just happened directly after that horrible flight home from Ireland. I could not tell anyone about my anxiety about being on that damn plane for so long. It made me realize that something had to change. I knew that you would help me.

  This was the first time we really understood. I’d never connected the two events before. Later, Emily wrote a whole essay on that flight, as if it had just occurred, giving us stunning insight into a moment that had left us traumatized and depressed.

  Every time she wrote, I felt awed and humbled. We were finally being admitted into the closed-off room that had long been Emily’s life. At last the walls that had long kept us separated were coming down and we could know our daughter. And the diction. I wondered how a person goes from making zero sentences over twenty-five years to this kind of writing, so fluid and perceptive.

  IN ADDITION TO writing her thoughts, poetry, and prose, Emily also showed us her heart. Gratitude was an element that showed up again and again. One morning, she was having a meltdown when Lindsey arrived. Once Lindsey got her redirected, she asked what had happened.

  I am upset because I couldn’t talk to Marta. I don’t think I ever have.

  Marta had been her day-to-day aide since before Emily left the UCLA program, someone she went on regular outings with.

  “Would you like to write her a note?” Lin
dsey asked.

  To Marta,

  Thank you for being there for me all this time. Makes me truly better to go places with you. The things we do are so important so let’s keep being better friends on courage and commitment. Thank you again my dear friend.

  Love, Emily.

  Emily was not only able to communicate basic wants and needs with us, she was able to let the people she cared about know that they mattered to her. You could see the satisfaction on her face when the iPad read the letter to Marta. Emily’s gratitude had been voiced.

  17

  Initially, Emily typed only with Lindsey. Then she tried with Marta, and though not as smooth, the process still worked. Marta asked her questions, nudged her sleeve, and Emily responded. Soon Lindsey introduced Emily to one of her other clients, Anna, an autistic woman five or six years younger who’d been typing for some time. Lindsey thought it would be fun for the two girls to meet.

  Through emails and phone calls with Anna’s parents, I arranged to have Anna come to the house for a visit. We hoped the two young women would be able to have a conversation with each other.

  Anna is a beautiful young woman with long strawberry blonde hair and huge, round blue eyes. When she came to our door, I was struck by her beauty as well as the noise-canceling headphones she regularly wore to reduce sound disturbances. Emily was eager to meet and converse with Anna; it was really her first time to “talk” with anyone who was even close to being a peer. Lindsey was there to mediate.

  Emily first apologized to Anna for being so loud with her noises—she’s always self-conscious about them—then told Anna that she was scared of not being able to live on her own, jumping almost immediately away from small talk and into the profound circumstances the two young ladies shared. When you’ve spent a quarter of a century not communicating, you don’t have time to waste on chitchat. Emily passed her iPad to Anna since it had become clear that Anna’s battery wasn’t charged and her own device wouldn’t turn on.

  Anna typed: I am not sure I could handle being on my own.

  Before the conversation could go much deeper, though, the anxiety that often comes with autism grabbed hold of Anna. She was feeling insecure. I want my iPad. I do. I am sorry but I’m really anxious without my ipad.

  Emily eased her concerns by sharing her own fears.

  I am always anxious without my parents, Emily wrote. I think I would like to [try living on my own again] some other day.

  Emily suggested that she and Anna work together to type roaring answers to life’s questions and break down the stereotype that spills into our autistic being. From the very moment she could type, Emily focused on changing perceptions about the autistic community, being an activist in her own way. Together, they wrote about misconceptions people harbored about them and how upsetting they were. They commiserated. Before they finished for the day, Emily confided that she wanted really badly to have good friends. Please come again my new friend.

  It was the first time Emily had had a conversation with a friend.

  IN THE DAYS that followed, Emily wrote mantras for herself: I am in control of my body. I can be calm. She asked us to print them so she could read them whenever she got too worked up.

  AT ONE OF their sessions, Lindsey asked Emily if she could go anywhere in the world, where would she go. Emily was full of ideas and dreams, but the biggest one, the one she wrote about most frequently, was to visit London. We were astounded as she told us details of the city: She pictured Big Ben and the soldiers with enormous hats, she knew about the River Thames, and that tall red buses filled the streets. She was fascinated by Lady Di and knew all about her and her tragic death. We didn’t know where all this information had come from. We’d never told her anything about London. She told us she’d learned about it from watching the news; she’d been five at the time that Lady Di died.

  I hoped that one day we could plan such a trip. Still, the angst of Ireland was still too fresh in my mind. With her new ability to communicate, though, things might be different. Anything was possible.

  AFTER EMILY’S BREAKTHROUGH, Lindsey called her boss, Darlene Hanson, to tell her what had happened. Darlene had been the one to tell us she didn’t think Emily would ever type because she had “too much language.” Now she was overjoyed by this news.

  I made an appointment for the three of us and Lindsey to see Darlene. I wanted her to assess Emily, to see how she and Lindsey were working together in case she had suggestions on how to improve their dynamic. Finally, I wanted her to teach me and Tom how to become a communication partner to Emily. To be able to have a one-on-one conversation with my daughter was a dream; I hardly allowed myself to consider how intimate and precious such an experience would be for me. I was hoping Darlene would hold the key to that dream.

  “Well, let’s see what you got, Emily,” Darlene said, having exchanged hellos and Darlene telling us that her daughter was getting married in a few days. Darlene sat next to Emily and positioned the iPad between them, grasping hold of Emily’s elbow. In seconds, the two were talking, Emily’s thoughts being read aloud by the app. At first, Darlene typed with Emily; they discussed Emily’s desire to type with me and Tom and how much more peaceful she felt now that she could communicate. Darlene tried to teach us what she did so that we could type with her. I went first.

  “Read aloud this article about pandas,” Darlene instructed me.

  I did so.

  “Now put your hand on Emily’s elbow and ask her some questions.”

  I followed her instructions. “What colors are pandas?” I tried.

  Emily looked flummoxed.

  “Ask, maybe, what a panda might like to eat, or how a panda might want to spend its day . . . ?” Darlene prompted.

  I tried to come up with interesting questions but panicked. My powers of imagination were so limited. I felt stupid. Whatever inane questions I came up with, Emily simply responded by typing the last word I spoke, nothing more. No flowing, magical sentences like she wrote with Lindsey. No lyricism.

  I wanted so badly to be able to type with her; I was frustrated. She could feel that, I’m sure. I don’t think my willfulness helped. The more I exerted myself to be a good facilitator, the more agitated and nervous I became. If it was this hard for me, who was neurotypical, I had some tiny inkling of how hard typing must be for Emily.

  Darlene took the iPad from me and asked Emily what was happening.

  In two seconds, Emily’s fingers again danced on the keyboard. Possible that it’s just going to take more practice, Emily typed.

  Tom tried next. He got a bit further. She was able to answer some of his questions, and he was much better about making up interesting questions. Still, her diction was garbled—Dad it little well coming calm my came—not the straightforward and expressive answers she usually gave to Lindsey.

  The minute Darlene took over again, though, Emily was discerning and clear in her responses.

  I think the problem is that we are too emotional with each other. Typing together will eventually take its place but I think it will be a long process.

  As we prepared to leave, Emily typed, Thank you Darlene. I hope the wedding goes well.

  OVER TIME, TOM and I have tried on multiple occasions—with Lindsey, Darlene, and other facilitators—to type with Emily. Our success has been, and continues to be, very limited. She’ll sometimes give us a sentence or two, but they’re never the detailed writings she creates with others. We continue to try. She has, however, made strides with many others.

  At her next session with Lindsey, Emily expressed her frustrations in trying to type with us and helped us understand.

  It’s not going as well as I would like with mom and dad. Only seem to get stressed out when we try to type. Maybe offer to try typing more. Doing better to calm each other would have a positive effect. Lots of time in the minutes I am upset I won’t want to type but I am sure I will want to talk about it after.

  “Parents are just the hardest people for individuals to
type with, the emotionality of it,” Darlene told me later. “The vulnerability is huge.”

  Still, I kept trying to plant the seed. “Look,” I told Emily. “It would make it so much easier if you could type with us because then we would be able to get all the stuff out of you on a daily basis.”

  Practicing with mom and dad is the priority, Emily wrote to Lindsey. Please let’s try on Saturday to type with them.

  We tried with Emily again and again, but her ability to type with me and Tom didn’t change. She typed with her psychologist, with Darlene, with other FC practitioners, with Anna and other autistic people. Just not with us.

  EMILY’S TWENTY-FIFTH BIRTHDAY approached and we threw a small party as we did every year. To those who would be attending, a number of whom were also autistic, she was the same Emily she’d always been. Most didn’t know about her breakthrough. Emily decided to tell them. The next time Lindsey came over, she asked to write a letter to share at the party.

  Dearest friends,

  Thank you for coming to my party. Knowing each of you just makes my life better in many ways. Many of you are unaware that I have found a new way to communicate through typing. It has truly changed my life in ways I go to lengths to try to understand and the impact of it is greater than I am able to even put into words. I hope with all my heart that very soon each of you will have a chance to get your feelings and thoughts communicated. Thank the people in your lives that help you to be your best self for giving their time. Make sure all the time to do the best you can. Thank you all again for coming and for listening to my story.

  Though she presented herself as so confident and together in that message, like most of us, she was feeling emotions behind the scenes that one wouldn’t know just from observing her. The story behind the story came out when Lindsey was over.

  I am all emotions today. Maybe something about being a year older makes me think about what I am going to do with my life. I am eventually going to need time in college. Places around the world I want to see and people I meet get feeling anxious about it, the kind of anxious that gets me all worked up.