The girl in the news story had been known to the police. Emily wasn’t. There was nothing to keep her from ending up on the wrong end of their guns.
When I showed Tom the news article that night, he was also upset. Because he’d been a criminal defense lawyer all his career, he was hyperaware of incidents when the police overreacted. “I knew firsthand all the awful things that could happen,” he said. “It terrified me.”
Behaviorists were always looking for the antecedent for a given incident: What set the person off? What triggered the meltdown? Once in a while we could identify an antecedent—Emily didn’t get a cookie she wanted and thus, had a fit. More often than not, though, there had been no antecedent. I now saw the situation clearly for the first time. It wasn’t about the stupid cookie. There were no clear antecedents for Emily’s meltdowns because they all expressed her frustration with her inability to communicate. She couldn’t tell us what was wrong, and that’s what was wrong. That was the antecedent. If we didn’t find a way to help her release that exasperation and communicate with us, she was going to end up in serious, perhaps lethal, trouble.
I Googled the subject and read about a fifteen-year-old boy with Asperger’s syndrome who’d been shot and killed by police; he’d been holding a steak knife.
One study showed that a third to a half of all police violence incidents recorded between 2013 and 2015 involved a person with some form of disability. A young man with Down syndrome was killed by police officers in Maryland after he’d attempted to go back into a movie theater without buying another ticket. Early media coverage implied that his disability was to blame for the incident and that it was a “tragic accident.” In a separate example, an autistic man in Virginia was tasered and arrested after a police officer confronted him while he was sitting outside a library.
If Emily were to have a similar confrontation with police or authorities, with no language, erratic mannerisms, and sometimes aggressive behavior, she could end up the same way. I couldn’t save her from everything. Still, we had to do something.
We’d already tried everything we could think of. We’d tracked down and used every behavioral, speech, social, psychiatric, occupational, and language therapy on the planet, some repeatedly. We’d consulted dozens of specialists around the country, chased down every internet lead, even the woo-woo suggestions. We’d spent a fortune on therapies and approaches to help her. To no avail. The situation was becoming more dire. Something had to change. Her communication skills had to improve, and we had to make that happen now.
“I REALLY NEED her to communicate,” I explained to Deborah Budding, the neuropsychologist I’d come to know and who later helped me understand autism better.* I’d run into Deborah at a conference sponsored by Darlene Hanson, the woman I’d met years earlier with her autistic typing client Sue Rubin. I’d attended the conference because my interest in facilitated communication was reemerging. FC might be a path for Emily, though Alicia Elliott had discouraged me.
Under the harsh glow of the fluorescent lights of the conference center, I unloaded on Deborah, telling her about what was going on with Emily, the UCLA incident, the police killing the young woman in Phoenix, my fears.
“What should I do?”
“I would call Peggy Shaeffer,” Deborah advised. “She’s doing all this work with movement and balance, core strength, the foundations that Emily will need to be able to communicate via typing. I’d go there first.”
So I did, driving Emily all the way down to Long Beach, forty miles away, once a week. Peggy provided physical therapy–type work on Emily’s balance and posture, having her sit on a big sphere, throwing a ball—activities meant to focus on her core and somehow prepare her to communicate. I wanted her to get closer to using a keyboard, to being ready physically to communicate in that manner, but this felt like a convoluted way to get there.
“When do you think Emily will finally be ready to try FC?” I asked Peggy after many months of therapy. I was getting frustrated. “Are we making any progress at all?”
“Oh, she won’t be ready for a really long time,” Peggy said.
I didn’t find that answer acceptable. I called Darlene Hanson, the FC expert, directly. There was no harm in trying. By this time, I had come to know Darlene professionally through my law practice.
“Your office is too far away for us,” I explained. “I was hoping there’d be someone in our area who could work with Emily.”
“Actually, I have a wonderful young woman who’s out on maternity leave now, but she’ll be back next month,” Darlene said. “She’d be a great fit for Emily. Her name is Lindsey Goodrich. Should I arrange it?”
“Yes, please. We need to do something.”
THE NEXT MONTH, March 2016, Lindsey, a young woman in her early thirties, stood at our doorway. She was about five foot eight, with reddish brown hair and an infectious smile.
My shoulders dropped almost immediately. There was something comforting and knowledgeable about her that I picked up on right away.
“Emily, come here. I want you to meet someone.”
Within minutes, the two young women, nearly the same age, were settled on the couch like long-lost friends.
Still, Lindsey had a job to do. She was there to see if Emily might learn to communicate via FC. In doing so, she was very kind to Emily but also rather direct.
“CAN YOU POINT to the letter ‘R’?” Lindsey asked, holding up a laminated letter board, like a blown-up keyboard, and then waited to see if Emily would cooperate. “We’re going to spell out some words. Let’s start with ‘red.’”
The idea was that if Emily could start “typing” out words on this blown-up keyboard, Lindsey could record the words and eventually, instead of just typing what Lindsey specifically asked her to type, Emily might start typing information about her experience of the world. She might start genuinely communicating with us.
However, no matter what Lindsey tried, Emily wasn’t interested in typing with her, though she did enjoy Lindsey’s visits. Lindsey tried different approaches—using a computer keyboard, pointing at pictures, asking Emily to finish sentences. Emily responded somewhat, but we could see that nothing was clicking.
I was still hopeful. I’m doggedly optimistic, sometimes to a fault, but that optimism wasn’t formidable enough to see me through the coming days.
DARLENE HANSON, LINDSEY’S supervisor, came to observe a session, to assess what was happening and make recommendations. After watching and interacting with Emily for a bit, I asked Darlene what she thought. “Will Emily ever learn to type?”
“I don’t think so. My experience is that FC works best with those who have virtually no language at all. Emily can say her name and a few words. She already has too much language,” she said. “I’m sorry.”
Too much language? She had almost no language. I was devastated. Emily couldn’t say more than a handful of words verbally and many of them were so garbled as to be unintelligible. It was hard to accept that answer. There was nothing else left.
“Don’t give up hope,” Darlene said, sensing my distress. “Lindsey is trained in speech therapy as well. I’ll have her work on articulation practice with Emily to see if we can get her speech to come across clearer.” It was a poor solution, but the only one we had.
OVER THE NEXT five months, Lindsey came to the house weekly for one hour. Together they read stories. Lindsey asked Emily questions about the stories to see if and how she might answer, verbally or on a keyboard—usually she didn’t.
My aide at UCLA didn’t get me. That was the problem.
It was the end of the day. I was very tired and she began writing on the whiteboard what I would be doing the next day. What she wrote was either wrong, or the plans had changed—it’s a little blurry now, trying to remember. I tried to express that I didn’t agree with what she was writing, but she didn’t stop. Really, she just ignored me.
My experience with other caregivers had been different. Even if I couldn’t explain wha
t, exactly, was wrong, they’d stop writing on the board and talk to me about what had changed. Or, seeing that I was upset, would leave it alone until we could come to some understanding.
But this aide just kept writing, paying no attention to me.
“No,” I said, using the one very firm word I know people understand from me. But she kept writing.
“No. No. No!” I repeated.
She continued on as if I hadn’t said anything. She made no effort to understand what was wrong, and frankly, I was scared of her. I was worried a lot about not being understood, worried and stressed about that, now that my life was always around people who didn’t get me, didn’t appreciate that I needed to know what was going on. They didn’t help me understand.
The fear in me began to grow. If she didn’t understand what was wrong now, what was going to happen when a bigger deal occurred and she didn’t understand? So I kind of blew up, doing whatever I had to do get her to stop writing, to get her attention.
She ran out of the apartment, and when the door slammed behind her, it locked her out.
And then the damn police showed up. They were not ready to try to understand a person with limited speech like me. They asked many questions.
“What happened?”
“What’s your name?”
“How did the door get locked?”
I couldn’t answer any of their questions and felt the panic growing. Their frustration and mine just fed the situation. And then the lady who ran the agency showed up and called my dad. I was so glad when he came to get me. He was safe.
In the days after I left the campus, I was happy to be home, and also sad to have left UCLA. I will admit part of me was pleased. It wasn’t my intention to come home but I was much relieved when my parents had me move back. But then, after that, the sadness grew.
Things at UCLA hadn’t been perfect. Sometimes it was stressful. The classes were boring. I was often homesick. I didn’t feel in sync with the other kids or my classes. My experience at home, meanwhile, had always been so comfortable. My parents understood me so well, they gave me space when I needed it. At UCLA, it was challenging, though I wanted to be there.
In the aftermath, though, I was worried most that my parents would be disappointed in me. Really, I only wanted them to be happy with me.
I also worried about my future. I really had no clue what came next. It was all at the hands of my parents, but I had just put a major bump in the only plan we’d had. I don’t want to think they were burdened by me, but they had that hopeless look. I bet they didn’t know what came next either.
Then I met Lindsey, I liked her instantly. She just treated me differently than most. I felt good around her.
With Lindsey, I felt like she knew what was inside me and believed in me, and that inspired me to work extra hard. She always spoke directly to me and talked to me as an adult, always validated my feelings. She became very important to me.
Working with her using letter boards, there were times I was so frustrated and she could see it. She was really understanding and would say things like “It must be so frustrating to not be able to say what you’re thinking.” She understood me. It’s not that there was a sudden change when I was no longer happy being silent. I can’t say that I was ever happy being silent, though I was content. Perhaps because it was all I knew. My whole life was based around the frustrations caused by not having a say. I didn’t know anything else.
When Lindsey first tried to get me to do FC, it felt hard. I could not really get what she asked of me because it was like stuff I could answer with words. She had me type my name and kept it really basic to start. It did not feel like the beginning of something much bigger.
I didn’t really understand what she was trying to get me to do. She was asking me questions that I knew she had asked before and I had answered, so why did she now want me to type it? Like she would say ‘what is your name?’ and obviously she knew my name. It wasn’t as frustrating as some other things, it was just confusing.
Lindsey mostly worked with me on speech therapy. We did a lot of the same things I’d done in other speech therapy sessions and we were not really getting anywhere, but I still made a lot of effort.
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Let’s talk about my physical stims. Vocal stims are me thinking. Or anger or excitement. Musical ones are me thinking or working.
List of physical stims. The left hand forefinger snapping with right hand next to it. This is my main one. It’s so many things but usually frustration. I think maybe it riles me up too much. Like just the act of doing it puts me in a bad or worse place. That’s maybe something to work on. It’s no good for me.
I’m partly at fault for getting frustrated in the first place. I think it’s sometimes autistic child taking over. That’s a lot of these stims. That’s a problem. I’m not even controlling my own body. I must talk with her. It’s the vocal stims and physical too. They’re all connected to her juvenile state. This is huge!
Right finger on right ear while making high pitched sounds: it’s autistic child thinking. The ear is like touching the brain. She makes the noises to indicate that she’s discovered something or made a connection.
Tapping left ear with index finger: this is frustration too.
I literally get mad at myself for my brain not achieving. Sometimes it’s more than one finger.
Rocking back and forth. This is something about feeling comfortable; rocking is like my security blanket. The motion is like being rocked to sleep.
Hit myself in the head with my left wrist. This is a bad one. It’s me wanting to hurt myself for not being normal.
“We’d love to have you, Tom, and Emily come along to Ireland with us.” One of the directors at Leaps n Boundz approached me about participating in the overseas adventure they were planning. Leaps n Boundz was a social services agency that provided adaptive sports, recreation, and social programming for individuals with special needs. Emily went to their facility on a regular basis and often enjoyed her time there. It was one of the ways we filled her days after the UCLA debacle.
Much of what the agency provided was funded by grants as well as through the state, but the kind of trip they were planning to Dublin would require families to pay privately.
I loved the idea of an overseas trip with Emily. Here was a chance to show her so much more of the world and to do so within the cocoon of this organization that was used to working with her, who knew her limitations, and who understood her as well as the challenges she could present. We’d travel with a group of thirty, seven of whom were autistic young adults, as well as their families and caregivers. Though all the other autistic clients were only minimally verbal, they still had significantly more verbal language than Emily. She could possibly do it.
Tom had reservations. “It’s hard enough managing Emily at home,” he said. “Her meltdowns have become more frequent. What if she gets aggressive overseas? That could be a nightmare. Maybe it’s too much to ask of her.”
“Wouldn’t you like to see Ireland with her? Explore the country? Get out of LA?”
“Of course I would. I just worry.”
We went back and forth. The travel agent must have wanted to kill me. I canceled and reinstated our reservation I don’t know how many times. I also went to see Dr. Wolf to get a hefty prescription of sedatives to keep Emily calm on the trip. She had a lot of anxiety, some of it caused by her sensory sensitivity. We used the medication cautiously and only as needed to help manage those symptoms.
“Just don’t exceed the dosage recommendations,” Dr. Wolf said.
“WE’LL BE ON a plane for a long time,” I explained to Emily. “We’re flying at night and your seat will turn into a bed. You’ll probably sleep the whole night away and when you wake up, we’ll be in Dublin.”
She nodded.
When the day came, Emily was beyond excited. She had known about the trip since its inception and wore a green T-shirt and bandanna in honor of the destination. We met up with
the group at the airport and took pictures. She couldn’t stop smiling.
Boarding the plane, Emily was entranced with everything, looking, studying, examining. She settled down for dinner, then she got into her pajamas and zonked out. No problem.
In Dublin, we checked into the hotel. Leaps n Boundz brought along an employee with a background in behavior intervention to help out with the group. Her services would be available to us whenever needed. We were ready for our European adventure.
We took a sightseeing tour of the city on an amphibious World War II vehicle known as a duck boat, together with the others from Leaps n Boundz. We learned about Viking-era Dublin, and saw both Saint Patrick’s and Christchurch Cathedrals. We viewed Trinity College, government buildings, and Georgian Dublin from the funny-looking conveyance. The climax of the tour was coming, when the duck boat splashed into the water at the Grand Canal docklands near U2’s recording studio. I kept looking forward to that part, hoping Emily would enjoy it. I could smell the sea air and braced myself. When our bus-like vehicle plunged into the water, the passengers broke into spontaneous applause so infectious, I couldn’t help but join in.
I looked over at Emily. She stared about, impassive, indifferent.
After that, the Leaps staff started gathering the young adults for a visit to a leprechaun museum. The parents were scheduled to tour and sample the goods at the Guinness brewery. Though the plan had been in place all along, in the moment it felt sprung on us as we rode together on a city bus. Our two groups were about to part ways.
I turned to Emily. “We’re leaving now, and we’re going to . . .” We tried to prepare her, but she and the other kids were all being corralled off the bus. It was abrupt and I could see she was upset.
As our bus pulled away, Emily stood on the curb in Dublin looking completely bewildered. She was screaming her head off.
There was a lot of screaming during that trip.
“Can you call Aer Lingus and see if we can just go home?” I asked Tom. “I don’t think this is going to work.”
I Have Been Buried Under Years of Dust Page 12
