Published August 23, 2012
Before they were even married, Michael and Susan Schofield decided if they ever had a daughter, they would name her January.
They both liked that month the best, mostly because it is the calm after the proverbial storm; the holidays are over, and it’s a peaceful time.
January Schofield was born in 2003 – but her demeanor did not reflect her name. Nicknamed Jani, she rarely slept, and her parents had to keep her visually stimulated around the clock just to keep the screaming at bay. As she grew older, the Schofields noticed their daughter was also brilliant. By 3 years old, she could read and calculate multiplication and division in her head.
But Jani’s behavior became increasingly disturbing. She tried to harm herself and others, including her newborn baby brother, Bodhi. She wouldn’t interact with kids her own age. Instead, she lived between two worlds: reality and an imaginary island called Calalini, where her ‘friends’ included animals and people she named after numbers.
In the coming years, the Schofield family, who live in Santa Clarita, Calif., would feel heartache, despair and a vast variety of other emotions when Jani was diagnosed with early onset childhood schizophrenia at 6 years old.
“I had a mixed reaction to it,” said Michael Schofield, who chronicled his family’s experience in a memoir titled January First. “There was a brief second of happiness – finally we have a name to it – and then the reality of what it meant hit me. Her life expectancy is shorter, and I might outlive her – and I couldn’t deal with that.”
Decoding the mystery
According to the National Institute of Mental Health, schizophrenia affects about 1 percent of Americans and is thought to be hereditary. It’s a chronic, severe and disabling brain disorder that causes people to hear voices and have hallucinations, believe other people are reading their minds, controlling their thoughts or plotting to harm them.
Usually, schizophrenia presents itself around the ages of 18 and 22, according to Dr. Mark DeAntonio, clinical professor and director of inpatient child and adolescent psychiatric services at UCLA Resnick Neurospsychiatric Hospital.
“It’s unusual to see it present itself below 12 years of age,” he added.
As a toddler, Jani had the mentality of an 11 year old. Her parents held on to hope that if she could just be around people who were as bright as she was (her IQ tested at 146), she wouldn’t have so many breakdowns.
“I thought the rest of the world was too stupid for Jani,” said Schofield, a lecturer at California State University Northridge. “(But) she became violent around the time Bodhi was born . . . one minute she’d be sweet and loving, and then it was like a switch was flipped, and she was trying to attack Bodhi, or Susan, or me.”
They visited multiple doctors, but no one was able to give them a substantial diagnosis. Conditions like autism or bipolar were mentioned, but nothing stuck. Several medications were prescribed. A dose of Risperdal, an anti-anxiety medication that would relax the average adult, had no effect on Jani. Two injections of Thorazine, an old-school anti-psychotic, failed to calm her.
“And then, as fast as it came, it would turn off again; she would act like nothing happened – there was no pouting, and there were times she was fine with Bodhi,” Schofield added.
Twice, the Schofields tried hospitalizing Jani in different psychiatric wards, anxious for a resolution and scared for their family.
It wasn’t until Jani was committed to UCLA – under DeAntonio’s care, and after trying to choke herself and jump out of her second-story bedroom window – that Jani was formally diagnosed with schizophrenia.
Relief . . . and fear
DeAntonio said when he first met Jani, who has been hospitalized numerous times since her initial visit, she was bright and verbal, but extremely disturbed.
“She was not unique, but for a child that age to have such floored psychotic symptoms with visual and auditory hallucinations – you don’t normally see that in a 6 year old,” he said. “We do have children that age in the hospital, but not for those reasons.”
DeAntonio explained that Jani most likely has more abnormal chromosomes than usual, which is why the disease has presented itself at such a young age.
“There was no way for (her parents) to know this before she was born,” he said. “There’s no testing like there is for say, Down syndrome. There may be a way in the future.”
Once Jani’s parents had a diagnosis, there was some relief – a treatment plan could be devised. But for the immediate future, Schofield felt hopeless. He said he thought about ending his life, even going as far as swallowing 20 Lexapro.
“My mind shifts to what life is like for schizophrenics, and it terrifies me,” Schofield wrote in the book. “(She) will probably never be able to go to school, let alone college. She’ll never have a boyfriend or get married. …I look down at Bodhi. He will never have a normal big sister.”
Schofield’s wife, Susan, was the one who came up with the idea for the family to move into two, one-bedroom apartments – thus keeping Bodhi and Jani apart, a helpful solution for a long time. They recently moved the family back together into one apartment, which so far, has been working.
Now 10 years old, Jani is on a cocktail of clozapine, Thorazine and lithium, and attends many therapy sessions – sometimes every day.
Her hallucinations and voices will never completely go away, but she’s made strides. She participates in equine therapy and volunteers at the Los Angeles County Department of Animal Care and Control.
“Watching her interact with ‘normal’ children is like watching kids who don’t speak the same language,” Schofield said, explaining she is slowly trying to integrate into a regular classroom.
DeAntonio added there is a chance Jani can one day have an independent functioning life.
“We’ve helped educate her as to when her experiences are psychotic symptoms, how she can get her needs met, and getting her to work better with her peers,” he said. “She’s a very bright kid.”
As for Jani’s family, they have become the ultimate in mental health advocates.
“I don’t remember who I was before all of this, and there’s no going back,” Schofield said. “But, there are a lot of kids out there like Jani and no support system.”