Dad Michael and her mom refused to confine Jani to an institution. (
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January First
A Child’s Descent into Madness and Her Father’s Struggle to Save Her
by Michael Schofield
Crown
January Schofield, Jani for short, a petite 9-year-old with wild, dirty blond hair and arresting blue eyes, looks out from the hospital’s fourth-floor window in Southern California.
“I want to jump down,” she says.
“You don’t want to do that,” insists her father, Michael.
“I want to die,” she adds softly.
He makes an effort to laugh. He’s heard this before. “I thought you wanted to live to 100?”
“I want to die at 9.”
He reaches out to her. “Why? Why do you want to die?”
Jani turns and looks at him. “Because I have schizophrenia.”
At only age 6, Jani was diagnosed with one of the most extreme cases of childhood-onset schizophrenia that experts have ever seen. She exists in a chronically altered state, hallucinating 95% of her waking hours about an elaborate and morbid world. A rat tells her to hit her brother; a cat tells her to kill herself; a girl tells her to jump out of a window.
Childhood-onset schizophrenia is exceedingly rare. Though schizophrenia occurs in 1% of the population, only .001% to five-hundredth of a percent of those people develop the illness before 12.
It is estimated that schizophrenia in children is 30 times more severe than in those who develop it later in life. Long-term prognosis is poor. Life is a chronic struggle without a cure.
Despite this, January’s story is one of redemption, of resilience, of a family coming together in spite of all to rally for a difficult, special girl.
“This is not a requiem for a child,” Michael writes in his preface. “This is a journey out of the darkness and into the light.”
Jani was never easy. Even as a baby, she cried almost non-stop, only sleeping in 20 minute increments.
Michael and her mother, Susan, found that the only way to soothe their hyperactive baby was constant stimulation. They took her to IKEA, the Los Angeles Zoo — anything to keep her mind active.
Just before her third birthday, her first “imaginary friends” appeared. First was Low the dog, followed by an orange tabby named 400. Every year, the number of friends grew, populating a fictional island off the coast of California that she called Calilini.
Michael and Susan assumed that these imaginary friends were part of her development. They already knew she was unusual — her IQ was tested to be a genius-level 146; at 2 she asked about imaginary numbers. By 4, she could read and multiply and divide in her head.
“Mentally, she’s between 10 and 11,” a therapist told the Schofields. And that bizarre but fully realized other world was proof of her intelligence, Michael thought. It was no wonder then that she found it difficult to relate to other kids. He decided to engage with his daughter’s world and to play along with her vibrant imagination.
After Jani’s fourth birthday, her parents welcomed a second child. They named him Bodhi after the tree that shaded Buddha when he reached enlightenment. Maybe he would have the same comforting affect on their daughter.
The opposite happened. Any sound from Bodhi elicited a violence no parent could imagine.
The third day after Bodhi’s arrival, Dec. 27, 2007, Jani threw a remote control at him because he wouldn’t stop crying. When she missed, she lunged toward her mother, who was holding Bodhi, and punched her stomach, narrowly missing Bodhi’s legs and launching her mother onto the couch.
Michael grabbed her arms, so she redirected her fists at him, knocking the air out of his lungs and punching him in the head. She had an almost superhuman fury. Jani scratched his face and bit down so hard on his chin that her teeth nearly met.
“I have to hurt Bodhi,” she said. “I have to . . . I want to.”
Later, she confessed to her parents that the rats — her imaginary friends — did not like the baby and ordered her to harm him.
Life irreparably changed. Michael couldn’t leave to attend his job as a lecturer at California State University because both parents had to be there at all times to protect Bodhi and hold down Jani. They woke up at dawn to take their showers and whisked Bodhi out before Jani woke up.
Jani’s imaginary friends, once a sign of her brilliant beautiful mind, had become dangerous. A child psychiatrist diagnosed her with ADHD and prescribed Ritalin, which only increased her energy.
One day, during a moment of clarity, Jani turned to her father and told him that she needed to go to a hospital.
“Why?” he asked.
“I want to hit Bodhi all the time. I can’t help it.”
In March 2008, Jani was admitted to a psychiatric hospital in Alhambra, Calif. But after three weeks, she remained undiagnosed. Upon returning home, and becoming violent again, she was admitted to a second psychiatric hospital, 100 miles away in Redlands. One doctor offered up an explanation of “severe anxiety;” another nurse just says that she needs to be managed more strictly and that “no one said that parenting was easy.”
In and out of psychiatric care, Jani’s behavior unravels further. She hits her beloved dog Honey, tries to jump out of windows and threatens to cut off her own head.
She attends first grade but is repeatedly cited for being disruptive and unruly. On Jan. 16, 2009, Jani, who had been running through the hallways trying to throw herself out of a window, is told she cannot return to school. When Michael refuses to remove her, the principal threatens to call the cops. He surprises them by agreeing that would be best: “I’m not enough,” he writes. “She needs more.”
The cops call in a psychiatric emergency team, who shuttle her to UCLA Medical Center. After a month of observation, one doctor offered up the possible diagnosis: a rare case of childhood-onset schizophrenia.
Schizophrenia in children this young is so rare that some experts, who have not treated Jani, told The Post that it’s “unprecedented” and possibly “suspect.”
Dr. Anthony DeAntonio, child psychiatrist at UCLA, who helped diagnose Jani, said that their skepticism is founded but adds, “If you met her when I first met her, there was no mistaking what she had. She presented with elaborate auditory and visual hallucinations that could not be described in any other way.”
DeAntonia says that in his 25 years at UCLA, he has only seen about one or two children a year as young as Jani with schizophrenia.
Those afflicted young people are offering valuable insights into the mechanisms behind schizophrenia, which is still a mystery.
Children, whose illness tends to be more extreme than their adult counterparts, have more noticeable brain abnormalities, such a loss of gray matter. Multiple genetic mutations, such as gene deletions or duplications, which recent research has linked to some cases of schizophrenia, are also seen in higher rates in children.
So, what to do with Jani? The Schofields had two options: institutionalize her or make it work. They chose the latter. But it wouldn’t be easy.
After four months at UCLA, Jani was ready to be released. Susan had an idea: “What if we get two apartments?”
With financial backing of family and friends, they moved out of their apartment and into two smaller one bedrooms across the complex from each other.
Jani’s apartment was outfitted to resemble the psychiatric ward. Like the hospital, they had a blackboard and penciled in who was on duty — mommy or daddy — and outlined the events for the day. All sharp objects or cookware stayed in Bodhi’s apartment.
Though this was best for Jani’s stress levels, it only heightened the growing rift between Michael and Susan. They fought, never embraced, couldn’t even sleep together in the same bed. Michael nearly had an affair with a co-worker, and when Susan found out, she almost divorced him.
A week after Jani’s return home, Michael swallowed a handful of Lexapro while taking care of his daughter, intent on killing himself.
As hopeless as it seemed then, as ready as he was to give up, he realized that he could not leave Susan to handle it alone. He realized that “every day there are moments where I see [Jani] smile, moments when I have hope.”
After a year and a half of living in separate apartments, Jani’s behavior had stabilized to the point that they could move into one unit again. The combination of clozapine, lithium and Thorazine was successful in controlling her psychosis.
“She did better at 9 than she was at 6. There’s no question that’s true,” Michael told The Post.
She still has her moments. Since her diagnosis, she’s been to UCLA 12 times, seven of which were in 2009.
“Basically, because she is in constant conflict between our world and her world every waking moment, eventually that wears her down,” Michael explained over e-mail. “In a sense, UCLA is kind of like a ‘break’ from our world.”
Six months ago, Jani returned to school to a special-education class for three hours a day. She does equine therapy once a week and often goes to a local animal shelter to feed the cats.
Her hallucinations are still there, though the “volume is turned down.” Now, instead of playing along with her delusions, Michael actively tries to root them in reality.
“I told her that rats only have a five-year lifespan, so some of them have seemed to have died off,” he said. The “friends” who once urged her to jump out windows don’t do that anymore. And Calilini is no longer a fictional island; it’s now the name she uses for a real town a few miles away.
But the happy ending that we’d so like to hear is still elusive.
Bodhi, who is now 4, has been recently diagnosed with mild-to-moderate autism. He throws tantrums and is speech-delayed. Michael is painfully aware that the risk for inheriting schizophrenia is higher — about a 10% chance — in people those who have one immediate family member with it.
“Is there a chance he has schizophrenia? Yes,” said Michael. “But I don’t really think about the future. That’s the only way I survive this or continue to survive this. We take it one day at a time.”