When Landau-Kleffner Syndrome (LKS) caused my son Holden—the son of a poet-professor—to lose language and take a hiatus from learning, my friends marveled at the irony. I wrote about it. They Fall into Screens is a memoir about raising a son with a rare epilepsy syndrome, which is to say it's about the fear of seizures and the fear of unknown futures, about how words unraveled in a child's mind just as they blossomed in his mother's. At the beginning, I didn't know seizures could scatter a child's words across fields of memory like a strong wind. Or that they could do this over time, syllables falling through synapses like sand in a sieve. This memoir narrates doctors' missed diagnoses of Holden's seizures and the deterioration of his behavior and language as I struggled to research solutions, keep my marriage together, maintain hope, and sustain a creative life. I wasn't always successful.
This following is an excerpt from deep inside They Fall into Screens. In this chapter, Holden, age six years old, finally receives the diagnosis of LKS at Children's Hospital in St. Paul, Minnesota, and his neuropsychologist tests him for his "baseline" language abilities. For me, this was the beginning of seeing/naming "aphasia" and "receptive language loss" as well as insight: I knew nothing about these phenomena. The scene ends on the beginning of a paradigm shift—an essential one for me as a nondisabled mother of a disabled son: his behavior wasn't about choice as I thought, it was a reflection of his physiological reality.
I dozed in Holden's hospital room while he played a game of Angry Birds on his iPad. After a few minutes, the door opened.
"I'm Liz Adams," a woman said, extending her hand to me. "I work with the neurologist, and I'm here to give Holden some learning tests to see where he's at." She turned to Holden. "Hi Holden!" She waited for an answer; he looked up at her and blinked. When he didn't say anything, she said, "I'm going to sit here, if that's okay." She sat on the edge of the bed and opened her bag.
I watched her earnestly. She was about my age—perhaps a few years younger—with straight brown hair pulled back in a loose ponytail, and she wore an outfit she could've pulled from my closet: brown leather boots and a pencil skirt, fine-knit blouse. In the ninety seconds she'd been in his room, Dr. Adams exuded warmth and confidence in her eyes, voice, and mannerisms. Perhaps she'll help me understand LKS, I thought.
"With LKS, Holden's ability to use language will fluctuate." She arranged a few sets of spiral-bound images and a notebook. "I need to ask the questions in a particular order," she explained. Holden glanced at her, then turned back to his screen.
"Do you need me to leave the room?" I asked."Only if you want to. Although it might be easier for Holden if you stay," she said. I sat on the other side of the bed, a bit closer to Holden than she was. She set one of the flip-books on the meal tray and lowered the tray so he could see it. Holden peeked at it.
"Okay, Holden." Her voice sounded like confetti. "I'm going to ask you some questions." He nodded. Dr. Adams flipped to the first page in the book which featured a pig, a horse, and a cow. "What is the animal that gives milk?" Holden pointed to the cow. "Good," she said, flipping to the next page. "What do people use to cut paper?"
"Scissors!" Holden said, pointing to the scissors.
"Good!" Dr. Adams flipped the page to a variety of kitchen items. "What do people use to eat food?" Holden blinked at her. Point to the fork! I thought. The fork. He held up his hand but hesitated.
"What do you use to eat, Holden?" I said. He looked at me quickly then returned to the picture. When he still didn't point, Dr. Adams turned to the next page and asked him a similar question. He got this one right, but after missing the next three, she switched gears.
"Finish what I say: After Kim broke the plate, Mother said, "Don't cry over spilled ——." Holden didn't get many in this category unless Dr. Adams prompted him twice or with the sound of the beginning of the word. Perhaps he hadn't heard some of these phrases before, but that was unlikely. He didn't even try to answer them.
In another part of the test, Dr. Adams asked him to find absurdities. "What is silly about this picture?" The image depicted a man trying to read a newspaper blindfolded.
"He's doing with a mask, white mask, yeah, trying to use a newspaper," Holden said.
"And this one? What is silly about this?" This image showed someone sweeping with an upside-down broom.
"That's a broom…hmm…broom-dust&hellip:broom is missing…upside-down," Holden said.
"Yes! Good job."
Others along these lines included a series of "What is missing from this picture?" questions. Dr. Adams asked two or three questions similar to each other before moving to a different part of the test. Midway through the spiral-bound book, Holden struggled, fidgeting in his bed and refusing to answer.
Dr. Adams switched gears again, taking a chunk puzzle out of her bag.
"Holden, can you put this puzzle together for me?" He smiled, eyes lighting up a bit. His hands tickled the pieces as he turned them left and right, snapping most into place.
"Thanks, Holden," Dr. Adams said, her voice more serious and firm. "You did a great job." She meant it. She didn't condescend to Holden or speak to him as a child. He smiled at her meekly, then turned to stare out the window.
Dr. Adams and I moved out into the center of the epilepsy unit to confer.
"On another day—or a different time of day—Holden could've answered more of those questions." I sighed. Dr. Adams moved forward, elbows resting on her knees.
"With LKS, some days or moments of the day are better than others."
"I'm understanding that now," I answered. I showed her a video on my phone of Holden melting down a few weeks before. That morning he had refused to change out of his shark pajamas before daycare. A book I'd been reading about ADHD suggested following through with "natural consequences" for behavior. Natural consequences? I thought. Wearing pajamas to daycare. It was a hot morning, and I was dressed up for an important meeting. On the video, I heard my own frustration; I told Holden to change his clothes before we went into the school, but he was speechless. He bent over himself, head on his knees, weeping. Dr. Adams scrutinized the video. I braced myself for her judgment.
"I regret that now," I told Dr. Adams, shame coloring my face. I started to cry, and Dr. Adams didn't avoid this moment by altering her body language or changing the subject. We sat in silence for a minute. Perhaps she didn't understand exactly, but it didn't matter. She just made space for tears to be okay.
"The book I read about ADHD wasn't helpful," I said finally.
"Right. It's not classic ADHD. What you've described and what I saw on the video is a typical sort of behavior with LKS. He probably didn't understand what you were asking him, and he probably couldn't find the words to tell you what he felt," she said.
"Well, then, why didn't he just get dressed?" I asked. "He's done that a million times, and I showed him his clothes."
"I don't know exactly, but I look at it this way: in that moment, he couldn't get dressed," she said. She sat back in her chair, and we let that sentence hang in the air as I tried to wrap my brain around it.
He couldn't get dressed. He couldn't. Not chose to or chose not. Simply couldn't.