Today opens a new world of doors for me. I am fully ready to tackle the college scene.
“Are you worried about anything?”
Please can we look at some more ways to help me not to have a meltdown at school?
We went over her list of strategies, including breathing, stepping outside if she needed to compose herself, reminding herself that she was in control of her body, and visualizing placing her noises in a wooden box.
I want to go mom. Makes me so thrilled to be finally to this day. I cant wait to show everyone that I can do this. Can’t believe I’m really a college student! This is a huge milestone and I’m not going to take it for granted.
PRIOR TO THIS day, Emily had composed a letter to her fellow students to answer their questions about her and to put them at ease.
Marta later recounted the scene for me. After taking roll and going over the class syllabus, Mr. Pacchioli invited Emily to present the letter she’d written for her classmates. Marta and Emily stood up and made their way to the front of the room. Marta pressed the iPad button to read Emily’s missive. Hello fellow students . . .
When the iPad grew quiet, just about every kid in the classroom had tears in their eyes. They wanted Emily in the class and they let her know it, clapping to show their encouragement. Emily, Marta reported, beamed.
19
I want to talk about my personal life by myself. I mean alone without a boyfriend. I’m afraid I’ll never have someone. Because I need special consideration from a guy. I am curious about Nik’s girlfriend because I wonder what he likes in a girl. I think other girls offer more than me to a man. I don’t speak with my mouth. I also make noises growl yell hit scratch and flip my fingers. I don’t want anyone but my parents to see this. And they should not feel sorry for me. I know I need to meet a man who is not already taken. I have not met that guy yet.
Where do I meet someone? I don’t have many ideas. Dances, parties, school. I know people meet people online. What should I do online? I want someone to know I am smart. I am funny and have a good sense of humor. I like many things and am interested in politics religion and most things people have to talk about. I am unique in that I type to talk. That is unique and fantastic. I am glad others agree. I feel good that people see me as special and coming out and transforming into a real participant in life. It was harder before.
I was nervous as we entered the small student-gathering hall at Los Angeles Valley College, but also excited. It was lunchtime and the Black Scholars Club was setting up for the occasional poetry reading they hosted. One young man stacked boxes of pizza on a table, the scent of pepperoni and green peppers wafting our way. A young woman arranged cans of soda, laughing and teasing a classmate. Others set chairs around the large round tables filling the room. The center area, framed by a fireplace, would be the makeshift stage.
The day was overcast and Emily had dressed in a soft yellow cowl-neck sweater that set off her dark hair. Her eyes were bright and attentive behind the geeky-cool black-framed glasses she’d chosen. Snug jeans and Converse All-Stars completed the look of an average SoCal college student. She hung with us in the back of the room, but was seriously eyeing the pizza.
Emily had previously attended a few of the group’s poetry readings and had been inspired by what she’d seen. Today, though, she was not going to be just another audience member. She was an emerging poet about to give her first-ever public reading.
It had been a long and oftentimes exhilarating road to get here.
IN THE TWO years since she began to communicate, Emily had taken a handful of college classes, first at Santa Monica College and then at Los Angeles Valley College, including English 1 and 2, African American literature, history, poetry, and psychology. With Marta or Lindsey at her side to take notes and to help her type if the professor asked her a question, she was able to attend and finish all the work. She spent hours each day completing assigned essays and studying for tests. She took her schoolwork seriously.
With every single class she took, there was the inevitable meltdown during one of the first sessions. When that happened, Lindsey or Marta whisked Emily out of the room and brought her home. Once calmed, she was able to tell us how her excitement had overflowed its banks, causing the commotion. After that initial breakdown, though, she was able to be present, to listen and absorb, and refrain from making noises. It was like she needed to get that one outburst out of the way in order to settle down and move forward. I attended the occasional class with her and was amazed to see how quiet, attentive, and studious she was when engaged. It was like encountering a different Emily.
She became an outstanding student. One day, Lindsey was in the process of reviewing her English class notes with her for an upcoming exam. As Lindsey tried to go over the details with Emily, she discovered that Emily didn’t need to see, read, or be reminded of the material the professor had covered. Emily could almost recount the professor’s lectures verbatim; her memory and attentiveness were that sharp.
Whenever tests were assigned, Emily went to the college’s testing center to complete them with Lindsey as her facilitator. The proctors kept a keen eye to make sure Emily was the one taking the test. Believe me, Emily would not have tried to cheat. She wanted to prove something—to us, to herself, to the world. She was smart and wanted to show us.
Her GPA was outstanding. Emily was thriving, even making dinners for Tom and me.
TUESDAY NIGHT DINNER
To anyone else it would be just a Tuesday. To people like me it’s the opportunity to give back just a little to the ones who have given me everything.
Flipping through the pages, I can’t help but wonder if Martha Stewart cooks the thousands of recipes filling her many cookbooks or if there is a team of people behind her creating and testing each one. There is no way the maven of doing-everything-better-then-your-average-housewife does everyone on her own. I am no Martha Stewart. Nonetheless, it’s my night to cook tonight so here goes.
Tonight’s menu is shepherd’s pie and salad. Looking through the recipe book of family favorites I turn to the page and begin to convert the list of ingredients into a shopping list. Damnit, my handwriting looks like a toddler’s scribbles! Maybe I’ll just take the recipe. I really don’t even like shepherd’s pie. I would never eat anything but cake and pasta if I could get away with it. My mother’s mission to incorporate variety into my diet, coupled with an ever-present concern for my independence, is what brings us to this moment. To Tuesday night dinner by yours truly.
Maybe I’m playing with the idea of being truly independent. Living every day as someone seen as incapable of being alone is a very interesting thing. There is always someone close-by in case I lose it. That does happen. I do on occasion lose control and become powerless against a storm of anxiety and fear. I wait for it to pass and begin to assess the damage.
Perhaps learning to cook can help me in some ways. Maybe just being able to control myself enough to contribute something, maybe that’s enough. I do enjoy it. I really find it makes me feel a certain sense of accomplishment.
Looking through the aisles in the maze that is the grocery store I often struggle to focus. My mind is mostly lost in having to take in massive amounts of input through my over-sensitive sensory system. Input that to anyone might go completely unnoticed might at any moment send me spinning. Lights flickering. Shoes are all different and each make particular sounds on every different floor. I can hear everything. In my mind the sounds swirl like a tornado. I am caught in the middle, powerless. Making my way through the chaos to find what I need. My movements are frantic. Task must be completed. That’s the way my mind works: like millions of tiny boxes waiting to be checked off. If only I could check them off more easily. I get stuck waiting for a cue, some kind of prompt to move, to go through the motions. I know what I need to do yet I’m frozen in anticipation of someone’s voice or gesture to trigger my action. I’d like to someday let that go. I finally get what I need from the store and head home.
<
br /> Potatoes, I have to boil them. Carrots and onions need to be sliced. Using a knife, I must be collected, in control. I am finding the peace to slow down, even if for only long enough to chop a carrot or two. Maybe my parents can see that it’s possible, that maybe soon I may need them just a little less. I know they need that. To be needed less means they have a chance to feel like other parents do when their children become more self-sufficient, even leave home. Right now it’s just dinner, and right now, that’s enough.
The smells waft through the house and hearing my dad’s anticipation makes me feel proud of what I’m doing. Not because I’m a woman and feel it is my job to be in the kitchen cooking for the sake of a man. It’s because I am an autistic adult and it feels damn good to sit down to enjoy a meal that I prepared with the two people who have spent my entire twenty-eight years taking my best interest to heart. Let me be capable of filling their bellies tonight. Let me be the one to give this time.
When Lindsey first announced she was moving away from the Los Angeles area in July 2017, we’d made the decision to transfer Emily from Santa Monica College to Los Angeles Valley College. It was closer to home and would make hiring a communication facilitator easier. Emily still had Marta who could type with her and accompany her to classes, but we were hoping to find another who could help with homework and studying.
Lindsey suggested Stephanie, a young woman who’d once been Lindsey’s roommate; she’d learned how to facilitate communication directly from Lindsey herself. Stephanie, like Lindsey, was bright and enthusiastic, someone who could joke with Emily and cajole her. Now Emily attended classes with either Stephanie or Marta, and on the weekends, a young screenwriter named Nik came to work with her on her creative writing. Nik was a handsome young man of Indian extraction who’d learned to be an FC facilitator.
It was so funny to see Emily and Nik working together. Emily would often ask him about his love life—she was gathering intel on how relationships among twenty-somethings worked. She reported back to Stephanie after Nik left.
She also made up fictional stories of her own experiences that she passed off to Nik as real. She came up with an elaborate story about how Stephanie had a crush on Nik and was interested in a relationship. This went on for several sessions and I was sure she’d eventually tell him it was a prank. When it became clear she had no intention of letting up, I ended it. There were other stories, too, including her insistence that she regularly watched TV shows he’d either been a writer for or had intimate familiarity with—none of it was true. In addition to being a poet, she was becoming an imaginative writer of fiction.
I don’t know if he caught on that she was messing with him. To be honest, I think she had a crush on him. She was spreading her wings, learning how romantic relationships between people her own age worked by asking him questions, and testing him with her stories. She also worked diligently on her poetry.
IT WAS NOVEMBER 2018. Nik was the communication partner who was to join us this day, for her first ever poetry reading. Among the extracurricular activities she’d learned about since coming to Los Angeles Valley College was this poetry event sponsored by the Black Scholars program. I had called the coordinator in advance. “Would it be okay if Emily participated?” I’d explained Emily’s limitations and the fact that she was not Black. I was assured she would be most welcome.
The previous Sunday when Nik had been over, I’d suggested he might like to accompany her and be her reader. He’d been enthusiastic. “Want to do it, Em?” he asked.
“Yes.” Her clipped assent was full of zeal.
“I can stand up there and introduce you,” Nik suggested. “I’ll be your voice for you, reading the work so the iPad doesn’t have to. Everyone will know the words are all yours. What do you say?”
“Yes,” she said.
Now, though, I wasn’t sure if Emily was going to go through with it. She was looking a little scared and overwhelmed. When Nik joined us, though, the two of them made their way to the pizza table and grabbed a slice. If she was downing pizza, I might be wrong. Maybe she was just fine with this entry into the poetry world.
Soon the room quieted down and the emcee asked everyone to please take their seats. I was in the back with Marta, my camera phone at the ready. I wanted to capture this moment on video. First one, then another student got up to read their poetry to polite applause. I looked over to where Nik and Emily were seated to see if I could tell by her posture if the plans to read were a go. It seemed like they were.
The emcee stood after the third reader and leaned into the mic. “We have a student with us today who’s come to see us quite a few times and has just decided to share with us. This is what this is about, folks, us getting out of ourselves, sharing ourselves. So she’s going to come up with one of her friends.”
Nik and Emily took the stage.
“This is Emily,” Nik said to the group of thirty or so scholars of color ringing the stage. “What I’m going to read is her work. I’m just helping her out here.”
Before he started to read, though, he told the gathered students a bit about Emily, explaining that she was a twenty-six-year-old college student. “Like a lot of you, she is into books, politics, TV, and movies, pretty much like any other woman her age.”
The reason Nik was up there, he told them, was that she was autistic. “It’s not what she is, it’s not who she is, it’s just part of her life,” he explained.
“I know a lot of you can relate to this. It’s not exactly the same as race, but being brown is not what I am,” Nik said, slotting himself comfortably into this room filled with other people of color. “It’s not who I am but it’s definitely a part of my life, and I wouldn’t change that. Autism, on a certain level, is much the same.”
Nik explained a bit about Emily’s struggles. “We all have those days when we’re so hungry, we’re so thirsty or caffeinated or distracted or tired that we can’t focus on what we want to focus on. We can’t even think straight. So it’s like two brains: one that’s hungry and thirsty and distracted by everything, and your usual brain, the one you use every day.”
He asked the group to imagine that conflict, every day, all the time. People in the audience nodded.
“That’s what Emily and others have said that autism is like. On top of it, their bodies don’t listen to either brain. Think of all that happening at every given moment in your day, and everyone looks at you and they don’t understand and think that you don’t understand, when actually you understand at a much deeper level than they could because you’re stuck with it. That’s what a lot of being autistic is and Em has described it for me.”
Emily stood next to him, looking a little shy but mostly comfortable, nodding a tiny bit in response to Nik’s words.
With that, he read her poetry.
When Emily’s portion of the reading finished, applause filled the room. Almost everyone there was a student of color. And here was Emily, as white and privileged—in the traditional sense—as they come. Still, there was a bond, an understanding between the other students and Emily. They’d each struggled to prove themselves, had overcome prejudices and biases that had nothing to do with who they were as individuals. They’d found a way to rise above those obstacles. They all knew, Emily and the Black students alike, that tomorrow the same obstacles would be waiting for them. In this lunchtime poetry reading, though, for this little pizza-fueled time together, they’d found a way to transcend those limitations and prejudices. They’d found a way to connect and empathize with each other.
20
T. S. Eliot once famously wrote in his poem “Little Gidding”:
We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.
Thanks to Emily, Tom and I were learning more about poetry, a language we’d never really spoken as attorneys. Poetry, meanwhile, was teaching us more about our daughter and
our lives together. These lines from Eliot became particularly apropos as we planned what I’d sworn I’d never do: take another trip to Europe with Emily.
She’d long talked with wonder and excitement about London, and I’d often wistfully wanted to show her Paris, a city where Tom and I had spent considerable time. Maybe this time, we’d come to know Europe and our daughter as if for the first time.
I booked flights via Air France and arranged for Stephanie to join us midway through the trip, when we were still in
Paris, before we continued on to London. That way, Emily could type freely and capture her thoughts as they occurred when Stephanie was around, but also, Tom and I could savor some alone time with Emily.
The flight over was easy. I’d downloaded videos onto Emily’s iPad and that kept her occupied. Once we landed, though, the heat was oppressive. Within a day the mercury would rise to 110 degrees.
After we landed and checked into the hotel, we went out for a walk to see Galeries Lafayette, the fancy department store in Paris with its rooftop gardens. Late afternoon began to morph into early evening. Though she was tired, as were Tom and I, Emily took in the experience with open arms. Unlike Ireland, where she’d basically put up with whatever site we dragged her to, Emily was engaged and present now. At the rooftop gardens, Emily stood at the edge taking in the City of Lights spread out beneath her, her face awash in joy. A look of awe and contentment suffused her. I took a mental picture to treasure later: here was my daughter, absorbing Paris, happy to be abroad.
A day or so later we took Emily to the rue Mouffetard, inspired by the words of food writer Ruth Reichl: “Walking down the rue Mouffetard in the early Paris morning is a completely sensual experience. This time of year the street is perfumed with strawberries and the fat white asparagus are everywhere, poking up with a curiously aggressive air. Meanwhile the cauliflower curl shyly into their protective green leaves, as if reluctant to emerge and face the sassy herbs in their bold bunches.”*
I Have Been Buried Under Years of Dust Page 18
