I am left with the storm, just me and the storm.
I am left with the words unspoken, just me and the unspoken words
The questions and ideas that form, I am left eternally within the storm.
One would think it a treasure, the time and space to contemplate long and thoroughly, like a philosophy spoken inside, well practiced and never too soon.
But what good are they, known solely by me, me and the storm?
We were trapped at 36,000 feet on the transatlantic Aer Lingus jet filled with 273 passengers, three-quarters of the way home to Los Angeles. It was August 2016. Because the trip over had been a piece of cake, I was unprepared for what was now occurring.
Things had started to turn on us back before boarding in the Dublin airport. I’d taken my shoes off to go through security and smashed my foot on something hard and metal. My little toe immediately turned black and blue; it was completely inflamed and swollen. I thought I might have broken it. I hobbled onto the plane.
“My daughter has autism,” I explained to the flight attendant as we were seated. “She sometimes has issues and episodes. I want to warn you in case.”
He couldn’t have been nicer. “Oh, I know. I have a nephew with autism. Sometimes they have their fits. It’s nothing to worry about it.” He even brought ice for my toe.
Once the plane took off, I realized I was in trouble regarding food. For some reason, on the flight over there’d been menu choices that would appeal to Emily. Now, though, as I read through the options for this flight, I realized she’d have trouble with just about everything offered. Usually I carry food for her just in case, but I hadn’t brought anything this time. I only had junk food—chips and cookies—in my bag. It was going to be a ten-hour flight. This wouldn’t do.
I called another attendant over and explained the situation. “Do you have, like pasta or something kind of plain she can eat?” The flight attendant managed to find a pasta meal that had been ordered but not claimed. Perfect.
Because she’d slept most of the journey on the flight over, I hadn’t then noticed the little privacy screens between the seats. We were in business class where the seats recline into beds, and now, with the screen between my seat and Emily’s, I couldn’t easily get around it to see how or what she was doing. We were flying in the middle of the day, so she didn’t want to sleep. I tried to get her to listen to music, to put on headphones, to watch a video. Anything to make the time go by faster, but she wouldn’t do anything I suggested. She sat there, almost totally immobile, staring at the blank video monitor in front of her. Hour after hour after hour.
“How about I put the bed down for you and you can take a nap?” I tried.
“No.”
She made little noises, occasionally flipping her fingers in front of her eyes. As time went on, the noises got louder and more frequent, as did the finger motions. She showed all the precursors of an episode. I tried every trick in the book to forestall the brewing storm. I gave her a sedative. It hadn’t helped much in Ireland, but it was all I had.
By the eighth hour, two hours before we were scheduled to land in Los Angeles, the dam burst. Emily’s screaming started. Her meltdown was audible to just about every passenger on that plane. She screamed at the top of her voice. Children near us look terrified and cowered. Adults appeared either scared or annoyed. The behavioral aide from Leaps, seated in coach, attempted to come into business class to help—she’d clearly heard Emily’s distress from the back of the plane—but the attendants wouldn’t let her through. They didn’t understand the situation. Meanwhile, the airline attendants in business class kept asking me to calm her. I’d already given her what I could.
The hardest part was this: she was miserable as well. She’d rather not be having a meltdown on a plane at 36,000 feet; I knew this with every fiber of my being. She’d rather not be autistic. She’d like to have a way to communicate with us. And if she could communicate, meltdowns like this might be a thing of the past.
I remembered Tom’s reluctance to take this trip, the way we’d scheduled and canceled flights, driving the travel agent crazy. Do we? Don’t we? Not knowing if she was able or if this was a good move for her. Had I been wrong to insist?
Now here we were, stuck with hours to go before we’d touch down, with Emily screaming, flapping her fingers, hitting herself, drawing the eyes of everyone on the plane. She was twenty-five, no longer a child. Her physical presence was big enough to call major attention. Her loud voice could be frightening, and her agitated movements sometimes looked like aggression. I wanted to crawl under the seat.
AFTER ABOUT FORTY-FIVE minutes, the worst of the screaming subsided. She was never fully quiet again on the plane, but eventually it wasn’t as bad as it had initially been. After we landed and collected our luggage, my brother picked us up. It was 6:00 p.m. on a Friday night in LA, the height of rush-hour traffic.
“We’ll tell you about the trip later,” I said to him the minute we got in the car to forestall any questions. “Let’s just get home.”
Emily started screaming again and kept it up most of the drive. I kept thinking, I’ll never get on another fucking plane with her ever again. When I whispered that to Tom, he said, “I want that on tape.”
We were wrecked, all of us. And frankly, I wasn’t sure it had been worth it. The truth was, no matter what we did, Emily hadn’t participated in much. She went along because she almost always goes along, but I don’t think she loved the trip. I was exhausted and sorry I’d pushed for it.
There is a moment of clarity before a meltdown hits. Like peace before the chaos that I would give anything to hang onto. But it slips violently through my grasp like a fleeting rope in a lost game of Tug-O-War, leaving me standing, hands stung, defeated. I am powerless. My mind in that moment bellows louder than my voice ever could. If only I would listen to myself. My mind pleads with my body but to no avail.
“You don’t need to scream,” I tell myself. “You can be the one in control.” Yet despite my own best efforts, the tornado touches down. I am forced to surrender to the violent storm.
“Maybe there’s something you can give her?” I hear the flight attendant ask my mom. “Something to calm her down.”
“She’s already taken enough.” Mom’s voice has the polite directness I know so well. “It’s not safe to give her more.” She’s trying to rein in the situation, but I’ve made quite a scene. And it looks like I’m not done yet.
I start to wonder if the attendant thinks they’ll have to land the plane, that my meltdown has gotten so out-of-control that that’s the only option. Fuck. Would they really land the plane? I can’t believe they would really do that, but I worry.
I’ve had my meltdowns in the past, but this—this is a new level of chaos. Hitting myself really makes me look crazy. I know that.
People sit, some stuck facing my direction. I know they want to look away but they can’t. My screaming and aggressive body movements don’t help. I wish I could stop it. I feel the heat of their stares drawn to me like a magnet.
I enjoyed the expedition. The days of traveling in Ireland were interesting but also overwhelming. This was my first trip abroad. My last, too, I’m sure, after this. And who could blame my parents? They put up with so much.
I’d been excited to go and there were many good moments, but they’re all backed up inside of me now. I am full to the brim with emotions and words and all that’s going on in my head and I have no outlet for all of it. Plus I’m stuck on this plane, everybody looking at me. I can’t get away, can’t find a way to calm myself.
I am a goddamn car accident.
15
“I almost called to cancel.” I ushered Lindsey into the house for her regular appointment with Emily the next morning and told her about the difficult flight. “Let’s give it a try and see if today’s session works out. Getting back to normal will help. It’s been a tough patch for all of us.”
We were utterly wrung out. That flight home had wip
ed out whatever reserves we’d had. When I’d woken that morning I hadn’t wanted to get out of bed. That was not like me. I couldn’t simply blame the jet lag. Something else was going on. I’d descended into one of the lowest points I’d ever experienced, as a parent, as a human. I never wanted to go through another flight like that again.
That morning, it took everything I had to put one foot in front of the other, I was so swamped with sadness and regret. Over the years I’d experienced melancholy and sorrow about our situation. I’d been angry and outraged and knocked low and unhappy. This was different. For the first time, I felt hopeless. After all we’d done, there’d been no payoff. Maybe there was never going to be a payoff. I didn’t want to keep moving forward; I didn’t want to take the next breath.
Frankly, I didn’t even want to interact with Emily. Her agitation was too much to be around. Tom had had reservations about taking this trip, so for me, its abject failure felt like a personal defeat. He didn’t say “I told you so,” but he had warned me and I hadn’t listened. I was defeated and looked like a fool. Yet once again, I’d made the wrong decision in my effort to give her every opportunity.
LINDSEY AND EMILY settled on the couch, this time with an iPad between them. Lindsey had recently tried the tablet in her work with Emily to see if that made any difference getting her to respond. So far, no change. Occasionally Emily would type one word. More often, nothing.
I busied myself, determined to keep moving forward. As soon as Lindsey started the session, though, things went sideways. Almost immediately, Emily became agitated. Her screaming began in earnest, filling the house. I wanted to crawl under the floorboards, to run away, to be anywhere but where I was, in this life I’d been given. Other mothers didn’t have to go through all this. Other marriages weren’t strained in this way. Why me? Why us? After that awful flight yesterday, I had no ability to absorb this new breakdown. I was done.
Emily started to hit herself in the head with her fists, one after another, pummeling her skull as she squealed and cried. Here we go again. I needed it to stop. Certainly, the fact that we were home should have made a difference. It was time for a break from all this.
Tom and I had never before experienced such a deep sense of defeat. I couldn’t keep going. I was so tired of this path.
“I got this crushing feeling inside,” Tom said later. “Oh my God: How much more of this can I take? Her screams hurt, like I was being jabbed in the stomach.”
“Maybe we should cancel for today,” I said to Lindsey.
“Don’t worry,” she assured us, shooing us away. “I’ve got this.”
“Come on, Tom,” I said, relieved that Lindsey was going to help. “Let’s go upstairs and unpack.”
Lindsey was a pro and busy working to redirect Emily with an article about astronomy and planets. She read the article aloud to Emily, and then, as Emily calmed, Lindsey asked her questions. From upstairs where I fought the urge to crawl back into bed and make this day go away, I could hear the session continue and the meltdown subside. They were talking about stars and planets; and serenity was returning.
“What is floating in space?” Lindsey asked.
Emily typed a basic response: rocks and dust
“A small rock is called a . . . ?” prompted Lindsey.
pebble, wrote Emily.
“And a big rock?”
boulder
The upset quieted. Tom and I unpacked from Ireland. Soon, though, it was simply too quiet downstairs. Emily often makes verbal sounds, a kind of singsong cadence you could play on a piano. Now, she wasn’t making any sounds at all. Tom and I looked at each other. Something was up. I couldn’t hear Lindsey asking her questions, either, which was odd. Emily had been highly agitated only a few minutes earlier. She didn’t usually quiet down that fast and that easily.
Tom left the bedroom to go downstairs to check. I was on his heels.
He was two stairs down when he almost collided with Lindsey, running up the stairs, holding the iPad. I joined them on the landing. Lindsey’s eyes filled with tears as she thrust the iPad into my hands.
“We just had a breakthrough. Read this.”
I feel very bad when I hurt people.
I looked at Lindsey, trying to understand. Was she saying that Emily had written this complete sentence, about how she felt inside? That wasn’t possible.
“She typed that?” I asked.
Lindsey nodded, too overwhelmed to speak.
Doctors and therapists and experts of all kinds had warned us that Emily would likely never communicate with us in the way we wanted. They’d cautioned that we shouldn’t expect to ever know what was going on inside her. Was I seeing only what I wanted to see?
I read the next line.
I want to tell you the thoughts I have never allowed out and thought they never would be. Now I’m certain I’ll be heard.
“What happened?” I asked Lindsey.
“I read to her and asked her questions, and she wrote one-word answers. Then, she just sort of looked at the keyboard, hunched over it, and began typing. Like, really typing.”
Emily wanted to communicate. She wanted to talk to us. I was floored, but also on guard.
Much of our work as parents has been in accepting and loving Emily exactly as she was and not wishing she was somehow different. Every dream for my daughter might now have reason to spread its wings. I wasn’t sure if this could even be real. If I allowed myself to believe it was real, if I let in the possibility that Emily might yet tell me about her inner life, I would be crushed if I found out it wasn’t true. And yet I wanted it to be real more than I needed to take the next breath.
Emily’s words on the iPad continued:
I have been buried under years of dust. Just found my voice. And now I have so much to say. I want you to hear me by reading my words. All the hard work will pay off now.
I was breathless and didn’t really understand what I was looking at. It wasn’t possible. It couldn’t be. Perhaps Lindsey had noticed our distress and, in her desire to ease life for us, had inadvertently guided Emily into writing words that were not really hers. Because, really, it made no sense that in one instant the impossible had suddenly become possible. I wanted to believe that Emily had experienced a genuine breakthrough, the kind we’d long dreamed of, but I wasn’t sure.
All these thoughts swirled as we stood on the landing, looking down at Emily seated on the couch. Our twenty-five-year-old daughter. Our beautiful, intelligent, deeply loved daughter. Please God, let it be real. We looked at her, shaking our heads in delighted disbelief and wonder, unsure of what was what.
Emily turned to look up at us on the stairs. Her face broke into a huge smile. She nodded at us as if to say, Yes, it’s real. I’m here. I’m ready.
Finally back in Los Angeles, nothing feels like home. The air in the house is heavy with exhaustion. All at once, something inside me awakens amidst my regular Tuesday session with my communication therapist and I am present in this moment. Years have brought countless treatments, therapies, you name it I’ve tried it.
When you’re autistic everyone thinks they can fix you. I don’t think I have ever felt like I needed to be fixed as much as I needed to be understood. Never seeing a way out of the haze, I fell inside myself. Collapsed were my ambitions while my fears refused to rest. I’m surprised by this overwhelming desire to find a voice, my voice.
Carefully I approach the letters on the keyboard unsure if this could work yet desperate to find a way out.
The amount of energy it took to point to each letter in order to spell out even a single word was astounding. The exhilaration of putting my thought down in a way that someone else could understand lifted me off the ground. It started with answers to questions about something altogether arbitrary. The questions then turned to me and I did something extraordinary. I answered them. Never again will I bury my voice. Never again will I be silent.
As it turned out, she was ready to communicate, though it took some
time for us to ascertain what was real from what we simply hoped for. We took her to her psychiatrist, Dr. Wolf, to have the doctor assess what was happening.
“When you first told me you were working with this kind of facilitated communication thing, I frankly thought, Poor people. They’ve tried everything and now they’ve got some person moving her arm around and they believe she’s typing. Oh my God, how could they go for that?” Dr. Wolf later told me, recounting those initial visits after Emily had started typing.
Her impression quickly changed, though, when I came into her office with Emily and Lindsey. “Then it was so crazy,” Dr. Wolf said, remembering.
Emily was sitting across from Dr. Wolf and Lindsey was just touching her shoulder. “And Emily’s like—slowly, because she does it with one finger—typing all her answers to me on the iPad,” Dr. Wolf said.
Some of Emily’s answers, the doctor remembered, were really funny. For instance, there’d been talk of Emily wanting to move in with Lindsey.
“How are you going to feel if you can make this move?” Dr. Wolf asked her.
“‘Well, my parents have been doing this a long time and I really think they need a vacation from me,’ and then she starts to laugh,” Dr. Wolf recounted.
The doctor told me that when she questioned Emily about her medications, Emily was able to respond in enormous detail about how she felt about each, and what was helping her and what wasn’t.
“[I could ask her] all the questions I’ve wanted to ask her but have never been able to,” Dr. Wolf said. She even asked Emily about the incident at UCLA and was amazed by her answer. Emily told her that she’d been so upset that night “‘because they thought I was stupid and they treated me like I wasn’t there. And I was so angry about how they looked at me and they would just try to make me do something.’ Emily didn’t feel like people were treating her like a person—and it’s so compelling for her to be able to actually say that and put these kinds of things together,” said Dr. Wolf.
I Have Been Buried Under Years of Dust Page 14
