I Have Been Buried Under Years of Dust

by Valerie Gilpeer

  I think about what I want to study in school. Maybe something in the field of law. I would like to be an advocate for lots of autistic people that have not yet found a voice. Lots of us are trapped inside bodies not connected to our mind. Makes for a very challenging existence. People need the back bone of someone strong to carry the weight of all the people who adopt the wrong idea about autistic people.

  Reading her words, particularly those giving us insight into what it’s like to be autistic, was astounding. Like having someone who’s blind paint you a picture of what their inner vision looks like, what they see. She was using words to tell us what it’s like to be nonverbal.

  It was hard to fully comprehend what we were seeing. Before this, Emily had never written even one complete sentence, never mind an essay, a poem, a short story, all of which now started to flow from her fingertips.

  I SHOWED EMILY’S work to my colleagues at my office. Many of them were thrilled and supportive and freely commented that this confirmed what I had always said about Emily—that she was really intelligent. One of my closer friends reminded me how Emily, in her younger days, did her math homework while seated at my office desk. “I’ll never forget how quickly she tore through her math problems.”

  Not everyone was on board with it.

  Tom and I were hesitant to tell people beyond our immediate circle that Emily was communicating and the methodology being used. I worried that they might not believe us, or might hold the FC controversies against us and Emily.

  AS THANKSGIVING APPROACHED, Emily wanted to write a letter to friends and family in what was effectively her public debut as a communicator.

  Many of you do not know that I have found a new way to communicate through typing. It has changed my life in ways I go to lengths to understand and its impact is greater than I am able to put into words. I would like my dear friends and loving parents to know this Thanksgiving what I am grateful for. I must begin with my amazing mom. She has never treated me as a burden but only as smart and capable. For her I am truly grateful and I am honored to be her only daughter. My father must come next. I am really the luckiest to call such a kind and genuine man my dad.

  I sat on the couch next to Tom, reading the message she’d composed with Lindsey, holding back tears.

  “Read this,” I told him. The message continued.

  Something I need you all to hear is this: I am autistic, not brain-dead. Please never again under estimate people like me. We make noises and do peculiar things with our bodies, that is undeniable. However our greatest affliction is that the world sees us as incapable of anything else. Make me proud to be a part of this world by helping me eradicate the misconceptions. Please know that I am thankful for each one of you and that you have taken the time to hear my words.

  Let’s all enjoy this meal and take the time always to be grateful to each other and go from here with new eyes for people on the autism spectrum.

  I put my head on his shoulder and cried. Our daughter has so much to say, so much eloquence that had been silenced for so long.

  “It’s beautiful,” he said, grabbing a tissue himself. “She might like us to post it on Facebook.”

  I checked with Emily. She liked that idea.

  “WHAT’S GOING ON?” Tom’s niece Annie, an attorney in Atlanta, contacted us immediately after I posted Emily’s message. “How is this happening?” she asked.

  I have only a few followers on Facebook and am not very active on social media, so I was surprised to hear from anyone—and so quickly. Over the years Annie had had limited contact with Emily as she lived in the Southeast portion of the US and we rarely visited with her and her family. Now, however, she was insistent. We filled her in, and before we were done talking, Annie was in tears.

  She reposted Emily’s message on her own Facebook page:

  “Below is . . . from my cousin, Emily Grodin. She is 25 years old and is autistic, and in all the times I’ve been with her, we’ve never had a conversation, I’ve only heard her say ‘hi.’ She has recently found her voice, and it’s incredible to hear it. Emily, I love you and can’t wait to hear what you have to say!”

  The number of likes, comments, and shares to Annie’s post humbled me. Hundreds of people from across the country, people who didn’t know Emily, who would never meet Emily, were weighing in, congratulating her, encouraging her, telling her they looked forward to what she had to say.

  For a quarter of a century we’d felt so alone and isolated in parenting and raising Emily, and I’m sure her sense of seclusion and loneliness far exceeded our own. Now it was as if two and a half decades of isolation were evaporating before our eyes. Emily, and by extension Tom and I, were rejoining the world. I hadn’t realized how Emily’s silence had kept her apart, not only from Tom and me, but from family and friends who wanted to know her. The world was asking to hear from her, wanting to know her. We finally realized that Emily’s breakthrough was real.

  Thanks to this breakthrough, she was able to tell us more about her experiences, often through poetry.

  Emily was happier than we’d ever seen her, full of ideas and plans. The big idea that kept coming up over and over again was to attend college. Santa Monica College (SMC), in particular. I don’t know where that specific choice came from other than we listened to NPR in the car occasionally—when Emily would reluctantly let me turn the dial from K-EARTH 101 and their eighties and nineties music to the public news station. KCRW is a National Public Radio member station that broadcasts from Santa Monica College. It was the NPR station we listened to as it came in with the strongest reception. They frequently mentioned on the air that they were located at Santa Monica College. So, she clearly learned about SMC while listening to the radio.

  I am so eager to be a college student, she wrote. I would like to take a course on political science and some thing in creative writing. I want to say thank you mom for believing in my ability to make a mark in this world. Dad you have always been my strongest supporter and I can’t say thank you enough. My education links me to the rest of the world.

  “College,” Tom said, shaking his head in admiration. We’d struggled to get her through preschool, kindergarten, grade school, then middle school and high school. And now college. We’d climbed so many mountains together.

  Now she wanted to climb Everest.

  18

  Hello fellow students,

  My name is Emily Grodin. I am 25 years old and really looking forward to sharing my first college class with all of you. I appreciate the opportunity to introduce myself in an earnest attempt to explain some things you’ll undoubtedly notice about me throughout the semester.

  In so many ways, I am just like everyone else. I am, however, also very different. I am autistic and might exhibit some unusual behaviors in class from time to time. I will do my best not to be a distraction, but ask for your understanding in advance.

  Please know that my most expressive communication requires me to type with the help of a trained communication partner. Despite my ability to speak, my thoughts and feelings may not be best conveyed through speech. I hope this will not discourage any of you from saying hello. I welcome your questions and friendships. Although my responses may be a bit delayed I assure you they are no less heartfelt.

  Thank you for your time and let’s have a great semester!

  Stuck in bumper-to-bumper traffic on the I-405 south, I scowled and worried we’d be late. Everyone else in Los Angeles suddenly needed to be driving in the same direction we were. Next to me in the passenger seat, though, Emily, couldn’t stop grinning. Her singsong noises lightened my mood; her exuberance and high energy filled the confined space.

  “You’re certainly in a good mood,” Lindsey offered from the back seat.

  “Yes,” Emily quipped in her high-pitched, clipped tone. She did a little dance in her seat.

  We were en route to Santa Monica College to meet her first-ever college counselor and to have her first-ever conversation about attending college.<
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  After we parked, I realized we’d arrived in plenty of time. We still had to meet up with Marta, who’d be accompanying Emily to her classes. While we looked for the Center for Students with Disabilities and coordinated meeting up with Marta, Lindsey snuck away for a moment.

  “Look what I have for you.” When Lindsey returned, she offered Emily a bag from the college bookstore. Emily clapped her hands and took the gift, opening it to find a Santa Monica College sweatshirt. She held the sweatshirt to her, her face split with satisfaction.

  As we navigated our way through campus, Emily wandered through a field of college students going about their normal day. The joy on her face was unmistakable as she imagined herself among them, her new sweatshirt in hand. She walked taller and held her head higher than I’d ever seen before.

  ONCE WE LOCATED Marta, the four of us signed in and seated ourselves in the disability center’s waiting room, the buzz of excitement among us electric. While we waited for Emily’s appointment, a man with a red-tipped cane, indicating a visual impairment, came in looking for help. Then a woman in a wheelchair. A handful of others also approached the main counter asking for advice or services to address the needs of those with learning disabilities, mental health issues, and cognitive challenges.

  “Welcome. How can I help?” The employee behind the counter was full of sunshine for each person who approached. I was immediately impressed. After years of bringing Emily to all sorts of educational institutions and being greeted by people who often saw us as a problem to be dispatched as quickly as possible, to be gotten out of the way, this was encouraging.

  “HI, EMILY. MY name’s Nathalie.” The fifty-something woman who came to greet us invited us into her office. All four of us crowded into the small space. “I’m a special education counselor here at Santa Monica College. What can I do for you?”

  I’d called ahead and made the appointment with Nathalie Laille, the faculty coordinator in the disability resources center, explaining Emily’s specific circumstances. It was December first, a little more than three months since Emily had started typing and said she was ready to take this big step. Nathalie knew from our earlier conversation that the iPad was how Emily communicated. She waited as Lindsey handed the tablet to Emily and held her shirtsleeve to prompt her.

  Please tell me how to become a student, Emily typed.

  I’d worried that Emily might withdraw inside herself at this interview. We’d discussed at home her desire to speak for herself and for us to take a back seat. And now, she was doing it.

  “What are you interested in?” Nathalie asked.

  I’d like to take a creative writing course.

  “The first thing is to take the proficiency test,” Nathalie explained.

  OK.

  Emily knew about the test. Before coming to the appointment, we’d talked about how she’d need to score well to be enrolled in regular classes. The test would take place in a special room with a proctor to verify that answers being entered into the computer were Emily’s and not Lindsey’s. She wouldn’t have any trouble with it.

  When we discussed class offerings, Nathalie tried to steer Emily toward more personal enrichment–type classes, electives like music appreciation, classes that wouldn’t require the entrance exam. She offered up many choices, as Emily respectfully listened. This is how students with special needs are often encouraged to start easy to see if they are up to the full-on college-level work. Emily remained polite but held her ground.

  Learning is so important to me. I would like to take courses in political science, history, and language arts.

  “So we’ll have to schedule the test first to see where to place you and what classes you can take.”

  Yes. Ok. I’ll take the test as soon as possible.

  “Would it be okay if Emily typed a letter to her professors to introduce herself?” Lindsey asked. “She’d like them to know more about her prior to the start of the class. We talked about this at home.”

  “She could, but maybe it would be best if I sent the email first,” Nathalie said.

  Please let me type to my professors myself. My independence is very crucial for my future as a college student.

  “I think we can arrange that.” Nathalie smiled at me and then turned her attention back to Emily. “Do you have other questions?”

  Would people ask me to leave if I make noise in class?

  “Can you explain what you mean?” Nathalie asked.

  Something I do in moments of stress is make noises. Really worried it may be distracting for others.

  “Please don’t worry about that now,” Nathalie said. “We’ll take things one step at a time.”

  We left the campus with Emily clutching her college sweatshirt and beaming as if she’d just won the lottery. She was going to become an actual college student taking a real for-credit undergraduate class. That is, if she could pass the English proficiency exam.

  EMILY TOOK THE college English proficiency test a week later.

  I am totally happy with my test results. Lindsey I am so ready for the next step, she wrote when they got home after the test.

  It was no wonder she was pleased. She’d scored 97 percent. All those times when I kept insisting she was smart, I’d always worried I might be projecting my wishes onto her. Now there was no question: 97 percent spoke volumes.

  EMILY AND LINDSEY sat together at the dining room table, the iPad before them a week or so later. Tom was in the room, wanting to hear Emily’s thoughts on the world and her place in it. Lindsey suggested that perhaps Emily would like to write a poem.

  “Do you need help getting started?” Lindsey asked.

  Emily’s “no” was loud and clear. Immediately, she began to write.

  In the world of autism, this was a pretty radical act. Many consider autistics to be highly literal, and therefore, locked out of the realm of poetry, replete as it is with metaphor and imaginative leaps. Tom was shocked when poetry emerged almost like magic on the iPad.

  PEOPLE.

  People stare.

  People judge.

  They think they know the truth, but they do not.

  People listen.

  People scorn.

  Like minds unfold in loudly raucous voices that burn

  People take.

  People open.

  Those together knowingly remain with greatness unwound and

  Broken.

  People be wary.

  People gather the one who you never thought ever.

  I will not go silent in spite of ignorance.

  People hear me.

  People change.

  “I couldn’t stop staring as her words jumped off the screen,” Tom said. “Not only could Emily communicate, she was a poet.”

  We’d never read much poetry to her. We’d made sure she was exposed to all the arts—music, theater, visual arts, performing arts, dance, improv, novels, you name it—but poetry? It had never really been our thing. And yet, poetry became her milieu.

  Tom was especially pleased. “My father, Eddie, though he was a highly regarded lawyer, writing was his first love. Whenever I see Emily put out these pieces, I wish he was here to see it with me. He would go crazy. Writing was his passion. He would be so proud of her.”

  WITH THE RESULTS from her entrance exam in place, Emily enrolled in English 1 at Santa Monica College with Mr. Pacchioli as the instructor, a class that would begin in February 2017. Just prior to the start of class, Emily (with Lindsey’s tugs on her sleeve) wrote the following email.

  Hello Mr Pacchioli,

  My name is Emily Grodin and I am enrolled in your English 1, section 1910. Per the advice of my counselor Natalie I am writing to introduce myself and tell you about what it might be like to have me in your class.

  I should tell you that I am autistic although I sincerely hope that you will choose to not define me by my diagnosis. The most important thing for you to know about me is how I communicate. I type my thoughts on an IPad with the help
of a trained communication partner. Having this experienced individual is a crucial part of my being able to express myself. I will be attending class with my friend Marta who has been with me for years. She knows me very well but she is still learning to type with me. I may not be able to participate fully in class discussion or answer questions unless materials are provided ahead of time to allow me the chance to type a response before coming to class. Please send me as much information as you can ahead of time and I will do my best to be as included as my classmates.

  I would be grateful for a seat near an exit in case I need to excuse myself. Sometimes I make noises and movement with my body that may seem strange or disturbing to others. Please know that I am doing my best not to disrupt the class and may step outside to get myself regulated.

  I appreciate your time and invite any questions you may have. In an effort to increase acceptance of people like me I would be so thankful if you would allow me the opportunity to introduce myself to the rest of the class. I will prepare something ahead of time to play on my device.

  Thank you again for your time. I look forward to meeting you and taking your class.

  With warm regards,

  Emily Grodin

  Marta would accompany Emily to her classes as Lindsey had other clients scheduled during that time. Marta would take notes for Emily and, if a meltdown occurred, whisk her out of the classroom before the meltdown became disruptive.

  She would also facilitate Emily’s contribution to the class if called upon to answer a question.

  EMILY WAS UP and dressed early that first day, so excited to start. It was February 2017. She’d never fought me about attending school, had always enjoyed it, but this exuberance and anticipation were new. Not only was she going to attend school, she was going to college and taking a class of her choosing. For the first time, she was demonstrating autonomy in her life, directing what she wanted and going after it. We discussed this before she left home.