Hushing the intruders in her brain
It was a little more than a year ago that January Schofield, at age 6, began to drift from reality. Suicidal, violent and plagued by hallucinations of rats and cats who conversed and played with her, she began the first of seven psychiatric hospitalizations.
As of today, Jani, 7, has been out of the hospital for 56 days, the longest period in 15 months. Together with her parents, Michael and Susan, and brother, Bodhi, 2, Jani is living a fragile existence -- haunted by delusions that sometimes tell her to hurt herself or others, even the people she loves.
But despite the family’s dire financial and emotional circumstances, that existence is not completely devoid of hope.
The child’s story was first described June 29 in the Los Angeles Times article, “Jani is at the mercy of her mind.” At the time, the family was struggling with the new diagnosis of child-onset schizophrenia and searching for a way to care for their child on a long-term basis. Shortly after the story was published, Jani was hospitalized for the fifth time.
She’s now living at home and attends school an hour each day for one-on-one tutoring. Her father is no longer employed as an English instructor at Cal State Northridge; he’ll soon receive a small advance to write a book about his daughter’s illness.
For now, the family scrapes by on his unemployment, forced by Jani’s illness to rent two small apartments, rather than one for the entire family. There, in a complex in Santa Clarita, one parent stays with Jani and the other with Bodhi. The arrangement is the only way to keep Jani at home and protect Bodhi from her unpredictable behavior.
“The two apartments have worked,” said Michael, 33. “Bodhi isn’t growing up scared of her. Our biggest problems are the normal financial problems that come when you have a mentally ill child such that you can’t work.”
Jani’s prognosis is unclear, but she shows some signs of progress. She takes a combination of the antipsychotic drugs Clozaril and Thorazine and the mood stabilizer lithium. She is less violent, less depressed and behaves well when engaged in something she enjoys, such as visits to the animal shelter or pet store.
Activity tends to hush the intruders in Jani’s brain. Because the stimulation needs to be constant, the family leaves the small apartments early each day in a search for free diversions.
Sometimes, when they run out of things to do, a panicked look comes into her eyes. “What are we going to do next?” she asks pleadingly.
Like a little bird, she flits from perch to perch, flapping her hands -- a nervous tic -- and chirping profound thoughts followed by nonsensical ones.
‘Eternal optimist’
“Jani is a very whimsical child,” said Dr. Linda Woodall, a child and adolescent psychiatrist in Glendale who has been treating Jani for almost two years. “There is this huge world in her head. Some of it is tormenting and some of it is delightful. And everything has a name. There is such a charming quality to that behind the illness.”
Woodall calls her time with Jani a learning experience for which there is no manual.
“It has been really difficult to find something to treat her symptoms,” she said. “But I’m an eternal optimist. I do think there will be the right medication for Jani some day.”
Jani still has frequent hallucinations, although her brain has altered the shape of those phantoms. She doesn’t see rats and cats as much any more and now tends to be haunted by numbers -- strange, twisted, towering figures that move and talk to her. She dislikes 13. He opens his mouth wide and frightens her. Five too is dark. Five bites her.
“She will tell me when they’re here,” said Susan, 40. “She’ll say, ‘Wednesday’s here.’ (Wednesday is a rat.) We talked last night about what schizophrenia is. I said it’s the hallucinations. This morning, we were talking about getting dressed. She told me her hallucinations always wear the same clothes.”
Jani sees Woodall one hour a week and sees a psychologist three times a week. But the Schofields have relinquished hopes of receiving any services from the Los Angeles County Department of Mental Health. In October, they received a letter from the department offering to place Jani in the Devereaux Foundation treatment center for children and adolescents with behavioral health problems in Viera, Fla. The family rejected the plan because it would make regular visits impossible or force relocation from Los Angeles. The county had previously offered to place her in a residential facility in Texas.
“We’re committed to keeping her with us,” Michael said. “Not just because the only residential offer is still out of state, but because she wouldn’t get love there. And that’s important.”
Department of Mental Health officials declined to comment on the case.
The Schofields are angry, but resigned, that so few resources exist to help a psychotic child. No residential center in California will take Jani because of her extreme behavior. She was also rejected at two private outpatient day schools for mentally ill children.
Any small problem -- an empty gas tank, Bodhi’s flu -- tries the parents’ already frayed resilience. The few relatives to whom they are close live too far away to be of much help, and others have been alienated by Jani’s illness. Both Michael and Susan take antidepressants and undergo counseling for depression. Many months ago, Michael made a half-hearted suicide attempt by taking an overdose of antidepressants.
“No one really understands what we’re going through,” Susan said. “That’s half the battle.”
Susan’s recent 40th birthday was spent at home with Bodhi, who was sick and fussy, while Michael spent six hours in UCLA’s emergency room with Jani after she told them that the number 80 was telling her to jump from a building. Michael was able to take Jani home after a psychiatrist assessed her and said she was not suicidal.
“Six months ago I was a professor and now I’m pretty much on welfare,” Michael said. “I think Susan and I are going through a period of feeling sorry for ourselves.”
Help from others
In their search for assistance, the Schofields have encountered other families similarly floundering because of the lack of appropriate mental health services.
They have created an online network for parents of mentally ill children to communicate with each other and provide support.
Others have not been blind to the family’s plight. The Times story led to an outpouring of financial donations and offers of help.
A San Diego elementary school teacher, Marla Rosenthal, and her friend Karen Cohen, who lives in Sherman Oaks, are planning Jani’s Giant Garage Sale for Jan. 17, at Congregation Beth Shalom of the Santa Clarita Valley.
“These are the kinds of parents who are going more than the extra mile and doing everything they can and are still running into so many roadblocks,” Rosenthal said. “I felt like I had to do something.”
The family’s greatest asset at the moment is a group of psychology students at Glendale College who spend a few hours each day at the apartment keeping Jani entertained. The volunteer arrangement was the idea of Daphne Dionisio, a psychology professor at the college.
“After I read the article in The Times, two things resonated,” Dionisio said. “Number one, Jani is stable when her parents engage her in constant mental stimulation. And, two, that constant engagement puts an enormous stress on her family. I thought I could help them.”
Her students have taken to Jani with joy.
“It’s deeply meaningful for them,” Dionisio said. “These are students who really want to help.”
Five students have worked with Jani this fall and 14 will take turns spending time with her each day in 2010.
This small web of kindness helps keep the family afloat and kindles hope for a better future.
“Over this year, we’ve really started to learn how to live with this and give Jani a life, even in the face of her illness,” Michael said.
“We’ve come to acceptance,” Susan added. “At the beginning of the year we really didn’t know the full scope of everything. We know now she’s a rare case.”
But they have no concrete plan for how to keep their fragile family intact.
The goal for 2010?
“It’s really day by day,” Michael said.