I Have Been Buried Under Years of Dust

by Valerie Gilpeer

  Was there any way we were misguided into thinking Emily was really writing to us? Had we somehow led the witness, and Lindsey was unconsciously helping her? I asked.

  “Anytime I’ve seen Emily type, she is actually the one that has the iPad,” Dr. Wolf said. “She has it on her lap on a pillow that I gave her and she’s doing it herself. And the only time I’ve seen Lindsey intervene is if Emily suddenly stops, like she’s in the middle of answering something and has paused. Lindsey will say, ‘Go on.’ And then Emily will just continue what she’s doing.”

  Dr. Wolf reminded me that there were questions she asked that only Emily would know how to answer, medical-related queries about specific medications.

  “For example, I changed one of her medications, from Valium to Xanax,” she said. “So I asked Emily about the difference between them. Emily said, ‘The new medicine doesn’t last as long. And I find myself more irritable and you know, it doesn’t work for me.’ It’s true that the Xanax doesn’t last as long. And it’s not as soothing as the Valium.” Those were questions Lindsey couldn’t have known the answers to.

  We’d tried facilitated communication before. Why did it work this time, and not previously?

  “I don’t know. She might’ve had so much stuff going on, or maybe the person didn’t do it right, or teach it right, or maybe the person was touching her too much and it turned her off. It could have been a lot of different things that were bothering Emily that would foreclose that working, you know?”

  She thought for a moment. “There’s a certain amount of people who are on the autistic spectrum that have very low IQs. They are not going to be able to communicate no matter how you’re going to work with them, because they don’t have that built-in capacity. It’s just not going to happen. And that really has nothing to do with this kind of facilitated communication. Anyone teaching them to read, or any other task like that, is going to fall flat. In Emily’s case, though, she was always very attentive to people reading to her.”

  It could be that Emily had been understanding a lot over the years, the doctor speculated, learning from books and such. Maybe she had the intellectual makeup needed and the preparation with all that reading we’d done had laid the groundwork, those elements all adding up.

  “I don’t think that every single person who is autistic could learn how to do this, and I don’t think that every single provider of facilitated communication would be calibrated enough to treat every single person who could learn. But I definitely think that it’s something that needs to be tried more often in the right circumstances.”

  Dr. Wolf said she fully believed that Emily was typing her own thoughts, as did others who’d seen her. However, she continued, “because of the controversy around facilitated communication and a lot of unfortunate high-profile cases . . .” Her voice trailed off. “One has to be careful about suggesting this as a way out, or a cure. It’s not a cure, not a pathway to communication for many, many people. It’s a really small number of incredibly intelligent people who are saddled with autism that this might work for. Does that make sense?”

  The doctor paused. “I guess what I’m driving at is that Emily is extraordinary.”

  16

  EVERYTHING SINCE THEN

  Everything since then has been somewhat of a dream,

  Something like walking in the shoes of a girl different from me.

  And the days that led me to this exact point,

  They have reason to stain my memory and disrupt my emotion.

  But I cannot deny

  And cannot claim

  That everything since then

  Would not be the same

  Had those moments not happened,

  Though sometimes with tears down my face,

  And the bubbling inside that pours into rage,

  It’s just that some days

  Have led to everything since then.

  And I would not be me if it wasn’t for her,

  The girl who was silenced and hadn’t yet heard

  Of the things that were waiting on just the other side

  Of frustration and anger and confusion inside.

  That eventually there could be another way,

  A better way to say what you need to say

  That doesn’t involve a landed plane

  Or red and blue lights

  And feeling afraid.

  Because everything since then

  Is when life really begins

  The everything that couldn’t be

  If it hadn’t gone that way for me.

  If I hadn’t lived those struggles and times

  That clearly state and clearly define

  A human with too much to say

  Who clearly doesn’t have a way.

  But it’s okay.

  It’s okay.

  Because of everything since then.

  “How many times a week can you be here?” I’d asked Lindsey before she left us the day of Emily’s breakthrough. Up to that point, she’d worked with Emily an hour a week.

  “How many do you need?” Lindsey was as excited as we were. “I’m in.”

  We couldn’t book her often enough. Three times a week, four if possible, an hour and a half each time. Soon we were able to book her for entire Fridays as well.

  WHEN I WAS young, I’d learned to write with “invisible ink,” which was really just lemon juice diluted with water. I’d dab a cotton swab in the mixture and write a message on white paper. When the liquid dried, the paper looked blank and plain. Give that sheet to someone else and tell them to view the secret message by holding the page to a lamp, light bulb, or heat source, and then the message would reveal itself as if the paper itself were enchanted.

  To watch Emily type was to see that same kind of magic being pulled from thin air before our eyes. It was mesmerizing, words and thoughts appearing where before there had been none—and no possibility of words. Tom and I sat behind the couch in the den where Emily and Lindsey were seated. Though typically Lindsey would prime Emily by reading a news article, this day, the first time we watched her type, she started out with a basic question. “How are you today?”

  I feel happy because now I can talk.

  I am beautiful now that a window in my mind has opened so my dreams can come to fruition.

  “What are your dreams?” Lindsey asked.

  going to college to study revolutionary ideas around autism. to communicate in everyday life with the people I meet and my family.

  “Any other dreams?”

  to be calmer and less noisy when I’m upset. that would need to happen.

  On the iPad, words and sentences appeared with such insight and knowledge, it was hard to believe. Prior to this moment, I’d had really no specific expectations of what it would be like to see my daughter communicate, but this was beyond my imagination. My eyes burned, straining to see each letter materialize, sentences and phrases that kept scrolling. I was awed. An actual conversation was taking place.

  Tom was also stunned. “I’d always hoped she’d communicate with us, but I never could have imagined she’d do so on such a level,” he said later. “This was absolutely mind-blowing. To watch Emily produce these words: it was off the charts for me.”

  Her spelling was perfect, making clear how much she’d been absorbing all along. She’d had an excellent English teacher in high school who’d drilled the kids on grammar and spelling. Clearly, Emily had been paying attention, absorbing the teaching, and learning. Initially, she didn’t capitalize the beginnings of sentences nor the personal pronoun “I,” but that soon changed. Her grammar was impeccable and her vocabulary astounded me. Revolutionary ideas around autism . . . a window in my mind has opened . . . These were not only big concepts well expressed, but done so with a lyric flare. She was being metaphorical.

  I ASKED LINDSEY to stick around one day after her session with Emily.

  “What do you remember about the day she started typing?” I asked. “I’m still trying to unders
tand.”

  “She just completely went off the article and said, ‘I want to talk. I want to communicate. You’ve been coming and I haven’t been doing it and now I’m ready.’”

  “Were you surprised?” I asked. I had been completely astounded and was still not sure what to make of it all. I wanted Lindsey to give me permission to believe.

  “That was the first time, for me personally, that anyone had had that kind of breakthrough,” Lindsey said. She’d already been working with Emily for six months and thought she knew what she could expect from her. When she’d bounded up the stairs to meet us, iPad in hand, she’d been overwhelmed. I clearly remembered her eyes tearing up when she handed me the iPad.

  Up to that point, Emily hadn’t been making progress. If Lindsey asked a question that could be answered with a yes or no choice, she was just going to type simply yes or no. If Lindsey asked something like “Do you prefer potato chips or cookies?” she would type the last option Lindsey had given her, whatever it was, regardless of her preference.

  “So why?” I asked. After all the therapies, all the experts, all the interventions, what had made the difference?

  “Emily has a lot of life skills and self-care skills that you don’t always see in individuals on the spectrum,” Lindsey explained. “She was encouraged to be as independent as possible. Plus, take into account all the exposure to the larger world she’s had.”

  It was true. We had encouraged her to be independent and had built her skills to move in that direction. She had been a full and complete participant in the greater world her whole life.

  “Think about it,” Lindsey continued. “Compare Emily to someone the same age who spent their entire educational career in a special education class. They might learn life skills and the calendar and that kind of stuff, but they’d be in a completely different place psychologically and emotionally than someone like Emily.

  “You and Tom always read her books. You put her in general education classes,” Lindsey continued. “You and Tom basically said, ‘We don’t know what’s going on, but we see a light in her eyes that tells us she’s with us. We’re just going to treat her like she deserves that education just like anybody else.’ That made a difference.”

  It was gratifying to hear Lindsey say that, though I won’t take the credit. Truly, it was Emily who pushed for this breakthrough.

  I’ve thought a lot about this question since and have come to realize that Emily started typing that day simply because Emily decided to. She has always done things at her own pace, when she was ready. I couldn’t make her do anything. I never could. Give her the opportunity, though, and she may decide to take the next step, just like she walked across the room on her first birthday. Things changed because Emily decided they needed to.

  IT WAS ALSO clear how sharply she’d been paying attention to our lives. She wrote about my mother, who was developing dementia. Emily’s insight into what was happening, and her deep empathy for the situation, were clear.

  LADY AT THE KITCHEN TABLE

  Late in the afternoon

  When the sun peaks through and almost splits the room in half.

  She emerges.

  Floats through the room like a weightless balloon caught on a soft current of air from an open window.

  Some may call her frail,

  Wrinkled lines and thinning skin,

  But in her bright eyes there is a strength.

  Hope and confidence still upright in a sea of blue waves eager to turn this vessel over,

  She will not be moved.

  The room fills with sweetness,

  Roses freshly trimmed,

  Warm cookies dipped in milk.

  Her soft hands embrace a cup of tea,

  Warmth engulfs her face as she lowers to sip.

  All of long memories will fade with the steam,

  A puzzled look settles in.

  What’s been home for forty years now unfamiliar,

  Glances around the room become as rapid as her beating heart.

  She moans a desperate sigh,

  Sadness pouring like the pitcher overturned splashes milk onto the floor.

  Her brightness has faded just enough,

  Each time a little more.

  She awakens but was never asleep,

  Lifts from her wooden chair her thin frame and stands tall.

  Perhaps another cup of tea.

  I’d seen autistic typers before and they tended to give primarily information and data—what they liked to eat, color or clothes preferences, dislikes—and they always presented the material in a very literal way, not with this kind of deep self-awareness coupled with expressive prose. Even in my work as an advocate for special needs individuals in which I’d encountered many typers, I’d never seen the kind of imaginative and evocative writing come from someone who appeared to have profound limitations.

  She also wanted to go to college. I didn’t know if that was possible, but we would pull out all the stops to make it happen if that was her dream.

  The physical reality of her typing was also startling to observe, like watching someone engaged with a Herculean effort. Her shoulders hunched to the task. The amount of strength, concentration, and effort required to get a single word out was visible. Sometimes, when she finished a thought, she collapsed back in the couch, worn out from the strenuous endeavor. She still made her noises, but they tended to quiet as she worked.

  We didn’t want to exhaust her by making her type all the time, but we did want to know everything: What did she think of this life she was living? What did we not know about her? Whatever our questions, Emily wanted to answer us.

  That said, it’s not like once she started typing daily life evolved into a study in perfection. Lindsey came to work with Emily on a regular basis as Emily gave us more access to her inner life, but the autistic meltdowns still occurred, often amid these typing sessions. When they did, Lindsey redirected her. This one day, Lindsey tried to focus Emily with an article about coal mining. Once the outburst had passed and Emily was concentrating again, Lindsey asked her what had caused the disturbance.

  I am not going fast enough.

  During a conversation about coal mining, Emily slipped in bits of her perception.

  Glad you came, she wrote to Lindsey, . . . back breaking work . . . this is just hard.

  I didn’t know if the “backbreaking work” referred to the coal miners or her strenuous efforts at communication, but clearly, getting her thoughts across was a labor.

  THE NEXT TIME Lindsey came over, they discussed sunflowers, and Emily expressed her gratitude, a theme that came up over and over in her writing.

  I am thankful for really being able to open the lines of communication.

  “What image comes to your mind when you hear ‘sunflowers’?” Lindsey asked.

  I see a field covered in yellow and green flowers facing the sun.

  “Can you tell me about your noises?”

  I make them when I feel total havoc in my body and that beats hurting myself.

  “Does anything help you?”

  Going for a short walk helps me to find peace.

  “When is a walk most helpful? In the moment you’re upset or at a different time?”

  Its best in the morning with dad.

  We’d often hoped that those walks she’d shared with Tom had been important to her, and now we found out they were. It was gratifying to know. Soon, though, she became upset again and started to scream and hit herself. Lindsey worked to transfer her attention away from what was upsetting her to a neutral topic. When Emily calmed, Lindsey questioned her. “Can you tell us what you’re feeling?”

  Maybe i’m not doing well with all these thoughts. Not an under taking i could have imagined in my life time due to a mountain of struggle you came not a minute too soon.

  I couldn’t help but look at Emily in a different way now. All the years I’d insisted that someone deep and connected to us was hidden within her. Now here she was, letting us s
ee her in the light of day.

  A WEEK OR so later, Emily and I went to Whole Foods where a young employee recognized Emily and said hello. They’d been classmates at Birmingham High School. Emily couldn’t stop smiling after that encounter.

  When she got home and had her communication partner with her, I asked, “What was going on at Whole Foods?”

  It was nice to be recognized by my face, she wrote, and not my perceived disability.

  I was moved. Yes, I can see how she felt, to always be known as the autistic girl rather than just Emily. This former classmate had seen Emily as herself. Being able to communicate that to us increased her self-confidence, made the good feelings spread.

  “Can you see yourself having conversations with people like that?” Lindsey asked.

  Yes, by next year I hope to be walking around with a new voice.

  “Why don’t we type some more now to warm up your new voice.”

  Emily, however, demurred. Anxiety makes my hands heavy.

  She typed regularly and willingly, but sometimes, it was a lot. We respected that and backed off.

  TOM AND I were ecstatic with this breakthrough. Still, it was also a period of questioning and disbelief. We weren’t sure if this was real. Given all the controversies surrounding FC, I needed to be sure.

  Whenever Lindsey came to work with Emily, Tom or I stayed in the room with them, not only to hear firsthand our daughter’s thoughts as they were read aloud by the iPad—we had downloaded an app that read her words one by one after she typed them, and when she came to the end of a sentence, spoke aloud the whole thought—but also to verify with our own eyes that what we were seeing was actually happening. We needed to make sure that Lindsey wasn’t somehow touching Emily’s hands, manipulating her.

  Initially, Lindsey gave Emily physical support by cradling Emily’s right elbow in her hand, giving a little backward pressure that provided physical stability that Emily needed to push through to type. Other times, as Emily progressed toward independent typing, Lindsey held just a piece of Emily’s blouse near her upper arm and nudged her to begin. Occasionally Lindsey didn’t touch Emily with her hand at all, but simply sat next to her, pressing the side of her foot against Emily’s foot to spur her. With that slight pressure, Emily would type.