The Language of Love: Michael Robinson

Bored by his big sister’s ballet class, Michael Robinson toddled over to the vending machine in the hall and spelled P-E-P-S-I aloud without a second’s hesitation. He was 18 months old, articulate and precocious.

A few months later, racing to get breakfast on the table, Jennifer Robinson said, “What do you want for breakfast, Michael, milk or juice?”

“Milk or juice,” he repeated.

“Stop it—this isn’t nice,” Jennifer said, exasperated.

“This isn’t nice,” he said.

What looked like a bratty game was about to become a nightmare. All the language Michael had acquired was draining away.

And even though his father, Dr. Cliff Robinson, was an emergency physician, he couldn’t diagnose his son’s problem. It nearly drove Cliff mad with frustration. Especially when people started saying, in syrupy, patronizing voices, that Michael might never recover, might have to be institutionalized.

Jennifer didn’t know what was wrong, but she fell back on instinct and common sense. “If it’s a language problem,” she said, “we’ll treat it that way.” They found a good school in Belleville, moved next door, and spent a chunk of their savings hiring college students to do speech therapy with him every day.

A year and a half went by as the Robinsons waited for doctor appointments, insurance approvals, testing. Autism was ruled out. Nothing else quite fit. They flew a speech expert in from Pennsylvania, and the expert was in the middle of an intensive weekend-long evaluation when the phone rang. It was someone from SSM Cardinal Glennon Children’s Medical Center, asking whether the Robinsons could come in right away.

“On a Sunday?” Jennifer asked, startled.

“Yes, as soon as possible. We know what’s wrong with your son.”

It was Landau-Kleffner Syndrome, a rare disorder that was discovered by Dr. William Landau, a professor at Washington University School of Medicine.

Michael was spending every day desperately trying to relearn the language he’d lost. Then he’d fall asleep and have seizures that erased whatever he’d learned. So he’d start over the next morning, a 4-year-old Sisyphus pushing the boulder back up the mountain.

With the new seizure medication, he gained three years of language in three months. That fall the special ed teacher teased, “Who is this child? This is not the same child you gave me last year!” There was talk of moving him up to regular kindergarten.

Then Cliff, who was in the military, received orders to go to Germany.

“Oh no, we’re not,” said Jennifer. “Michael’s just got his language back!” Cliff insisted there would be excellent services in Germany. They fought; Jennifer capitulated. In Germany, she became pregnant with their sixth child.

And Michael had a relapse.

“I’d thought, ‘Oh, yay, we made it through,’” recalls Jennifer. “Then I saw the dark circles under his eyes. He wasn’t sleeping as well. The neurologists there had never heard of Landau-Kleffner. They wanted to fly him—alone!—back to D.C. to get an overnight EEG.”

She emailed his neurologist at Glennon. “Get on a plane and come back,” she was told. “I need to adjust his medications, or it will get worse and take him longer    to recover.”

Jennifer coolly informed her husband, “For Christmas I bought the family plane tickets, and I found an apartment in South County, and I hope you can get orders to join us as soon as possible.”

She packed a frying pan, a spatula, and sheets in her suitcase; the military gave them bedrolls and air mattresses. “It was probably the craziest thing I’d ever done,” she admits. “But that Thursday, Michael had his EEG.”

Even the test was a hurdle. Jennifer takes medication that wards off grand mal seizures; she hasn’t had one since she was 20. But what brings them on is fatigue. So here she was, six months pregnant, with five kids, and the EEG required keeping Michael up all night. Usually Cliff, a night owl who often takes late shifts in the emergency department, handled the job. He actually enjoyed it—they’d watch movies, play games, drive to Steak ’n Shake. But Cliff was in Germany, packing up their household possessions.

Michael’s sister Rebecca, all of 10, took charge. She and Michael watched Shrek and played video games. Jennifer dozed. And the EEG results were clear enough for the neurologist to adjust the medication.

Michael did OK for another 18 months. They moved twice more, trying to find the right school. When he got frustrated, he could find a green card (they were mounted with Velcro in every classroom) that meant, “I can’t find my words.” One of his meds gave him a tremor, so he wrote with weighted pencils that his sister Emily, a budding artist, fell in love with. He carried around fidget toys and squish balls to help him focus. He began piano classes and then violin, finding huge relief and release in the music.

But when he relapsed a third time, his doctors said, “You need to make a choice.”  Brain surgery or steroids. “The steroids were dangerous,” says Cliff, but the surgery could cost him his sight or hearing. “And there was a saying back in med school: ‘You are never the same once the air hits your brain.’” 

When they chose the steroids, they suddenly remembered the night, years earlier, when Michael took steroids for an acute respiratory infection. He stayed up all night and reorganized all the toys in the basement, and the next morning he explained what he’d done with perfect, flowing speech. The fluency was surreal, and it vanished almost immediately.

Now he’d take high-dose steroids for more than a year. He gained 30 pounds in the first month, and soon he was wearing pants that were “basically Santa Claus’s gym shorts,” as he puts it. “The day I got out of huskies is the best I felt at that age.”

By the end of fifth grade, his speech had smoothed, and he was starting to form solid memories. He no longer had to rely on quotes from movies to communicate. (Cliff imposed a fine whenever he quoted inappropriately rather than come up with his own words, and the whole family used to chant, “Movie line, movie line, fif-ty cents!”)

Michael remembers seeing a Star Trek episode around that time—“Darmok and Jalad at Tanagra”—that showed him what he must seem like to the other kids. “It was about an alien species that communicated only in metaphor and allusion,” he explains. “I got to see what my interactions seemed like to other people—ironically, in the form of a movie!”

He was invited to join the Missouri Scholars Academy. Auditioned for and was accepted into the Saint Louis Symphony Youth Orchestra. Gave a brilliant speech accepting the Young Achievers Award when the rest of the recipients just ducked their heads, blushed, and grinned. Invited a senior to his junior prom by rewriting the lyrics to “Let It Go” as “Will You Go?” and singing her the song during an honors class.

“Reputation is something hard to escape,” he remarks. “That effectively gave me a new one, as a more gutsy figure who could mingle with his peers.” (Also, she said yes.)

Michael has what he calls “a more broken syntax.” There are pauses in his eloquence—in fact, he sounds a lot like President Barack Obama. “It’s more robotic and thoughtful,” little sister Emily supplies.

“I don’t do slang,” Michael says. “To be honest, most of my high vocabulary or archaic language, a lot of it is allusion-based, references to stories or works of literature or something from another culture or historical era. What I’ve done this year, and it’s slightly annoyed Mom and Emily, is force myself to research things normal guys know a lot about, like sports.”

“He has no coordination,” Emily says, rolling her eyes at the hypocrisy of it all.

“I come back from college and he’s talking about teams and stats,” Rebecca says. “I’m, like, ‘Who are you?!’”

But his parents are proud that he thought of it. “Most people don’t play sports, but they still talk about them,” Cliff adds. “If you can do that, you have half the male population in your pocket.”

Until now, they’ve thrown all their emphasis on raising Michael as normally as possible. Now they’re shifting gears, “giving him the tools to become whatever he’s going to become,” Cliff says, “because we don’t want him living in the basement!”

Rebecca says, “During his college application process, he’s had to struggle, because for a lot of his life it’s been ‘Let’s help you be normal.’ And there comes a point where Michael’s…Michael. So this year it’s been ‘I have this amazing story, and my whole life I’ve been trying to overcome it. Now he’s trying to own it.”

What’s it like, I ask him, to hear about yourself in the third person and learn how you struggled to form words?

“It’s—unsettling, I guess is the word I would use,” he says. “It puts into very real perspective the many courses my future could have taken, none of which are as pleasant or fulfilling as the life I have now.”

I ask if the word “normal” bugs him, given that most of us are atypical in one way or another. He says he wishes “normal” wasn’t such a pervasive category: “It calls for false expectations and sort of downplays strengths. But human beings need to simplify ideas, so they come up with what is typical or normal, and therein lies the need to understand what the majority of people see that as. Whether I will be normal or extraordinary is a separate discussion altogether.”

I nod, still parsing the paragraph he’s just uttered. What does he think will be toughest about college?

“The biggest test will be college parties,” he predicts. “My gut tells me I won’t see many of them, but I will be there. I have no idea what alcohol will mean for me if it’s introduced to my brain. But I very rarely cave to peer pressure. Once I find the perfect answer [to all that ‘Have a beer’ urging], I think it will be easier.”

Is he ever scared that what happened to him as a kid could happen again?

“Funny you should ask,” he says. “I thought once I reached adolescence I was in a safe neurological zone. From Mom talking to Dr. Landau I learned that may not be the case.”

Amazed to hear that Landau keeps an office at Wash. U., Jennifer called him. He was fascinated to hear about Michael; many of his patients had trouble even speaking, and none showed any musical ability. Then he asked if they’d done a recent EEG.

“I thought once he hit puberty we were out of the woods?” Jennifer said. When Landau casually asked whether she had any reason to be concerned, a sick dread crept into her heart. With all the stress of applying for college, she’d noticed Michael processing things a little slower some mornings. And Michael said he’d noticed that, too.

She glances over at Cliff as they tell me this. “I’m not looking forward to college,” she admits. “This is when I wish I could not care.”

“We are in uncharted waters,” Cliff says.

“But we will only be an hour away,” Emily points out.

They’re moving again. Michael received a full-ride scholarship to the University of Virginia, where his sister’s studying, and the rest of the clan will live nearby in  Charlottesville. Just close enough for comfort.

They are, I tell them, amazing parents. “Michael changed us,” Jennifer says simply. “When you first become a parent, your expectations are ‘Oh, I want my kid to be a great soccer player,’ or a doctor. Ours became ‘I really hope my kid can talk one day.’

“He taught me how to love.”