Schizophrenia in Children: Families Grapple With Costs, Emotional and Financial

Photo: Families Grapple With Costs of Childhood Schizophrenia: Months-Long Hospitalizations and Marital Stress Among Challenges Facing Families Whose Kids Suffer From Severe Mental IllnessPlayCourtesy the Schofield Family
WATCH Jani Tormented by Hallucinations

Thirty miles north of Los Angeles, in a community in the Santa Clarita Valley, Michael and Susan Schofield are doing their best to keep their family together while mental illness forces them to live apart. The Schofields live in two different apartments, one for each of their two young children.

Since the age of 5, their older child, Jani has experienced violent and commanding hallucinations in the form of numbers and animals that tell her to hit, kick and bite her parents and her younger brother Bodhi.

Early in the summer of 2009, the Schofields started living apart to help manage Jani's battle with childhood-onset schizophrenia and protect both children. "She was five years old, and she came up to me and said, 'Mommy, I can't tell the real world from my imaginary world,'" Susan Schofield told ABC News correspondent Jay Schadler.

Caring for Jani: A Full-Time Job

By 2009, Jani's schizophrenia was so debilitating that she spent 207 days in UCLA Resnick Neuropsychiatric Hospital that year. Her doctors said they believed she hallucinated during all of her waking hours.

Jani, now age 9, has improved since then, having gone to the hospital only twice this year. Her violent tendencies are mostly gone, but she still deals with her psychosis daily. She manages it pretty well, although she still talks about her hallucinations. She's starting to deal with the social anxiety that comes with her age, and this stress can make the psychosis worse.

For more information on childhood schizophrenia.

She attends school, thanks to the unique two-hours-per-day program the Newhall School district constructed just for her: one hour of occupational therapy and one hour of tutoring with a teacher and an aide. The Schofields often visit a local animal shelter so Jani can play with the animals and she receives equine therapy once a week at Carousel Ranch in Santa Clarita.

Jani's parents monitor her powerful antipsychotic medications: 300 milligrams of Clozaril, 100 milligrams of Thorazine, 900 milligrams of Lithium and two antihistamine pills each day.

The Schofields face a financial fight as well. Keeping the two apartments has put immense economic strain on the family. Susan, now 41, was laid off from her job as a news and traffic reporter in September 2008. Michael, now 35, took a leave from his job at a state university in the fall of 2009 to help care for Jani. Michael has gone back to teaching since then but paying for two rental properties, various medications, psychiatric therapy and food stretches their finances to such a limit that at times, Michael has asked solicited financial help from friends. The Schofields considered moving out of their two apartments and into a two-bedroom unit earlier this year, but the idea made Jani extremely anxious, so they backed off.

Michael and Susan Schofield have also battled insurance companies to get them to help pay for their daughter's hospitalizations. Jani's hospital stays have been covered jointly by state and private insurance. The Schofields said that before they took their story public, their private insurance company would frequently refuse authorization for hospital stays after two weeks regardless of Jani's condition.

The Schofields fear Jani's brother, Bodhi, has autism, but there has been no official diagnosis. The Schofields must also contend with the fact that there's a 50 percent chance that Bodhi also has schizophrenia.

Michael is writing a book about Jani, and the Schofields fight for childhood mental illness reform. They plan to organize a march on Capitol Hill next summer to bring more attention to the issue.

Girl Thrives Despite Paranoid Schizophrenia

During one of Jani's hospital stays, she met Rebecca, then age 9, who'd been diagnosed with paranoid schizophrenia. Like Jani, Rebecca had been battling hallucinations for years. But instead of rats, cats and numbers, Rebecca saw frightening images like wolves, men with monster faces, and shadows and shapes that would scamper around a darkened room at night.

Cinnamon Stancil, 38, Rebecca's single mom, lives in Simi Valley, Calif. She struggled with challenges similar to those of the Schofields: an enormous list of medications tried and discarded; months-long hospitalizations that seemed to produce little improvement; costly psychiatric therapies; and struggles with the insurance company, which limits the number of Rebecca's hospital stays per year. Rebecca's psychiatrist visits added up to hundreds of dollars a month, and in the fall of 2009, Stancil was laid off from her job in security.

Moreover, while Michael and Susan focused primarily on protecting their young son from his sister Jani's violence, Stancil used to lock herself in her bedroom at times, fearing for her own life. Stancil said Rebecaa once pulled knives on her and hit her with random objects, including the lid of a toilet seat.

Rebecca has been diagnosed with paranoid schizophrenia.

But Stancil's vigilance has been rewarded by a marked improvement in Rebecca's condition in the past year. Her main drug, Saphris, has been effective and her dosage was upped only once. Now 10, Rebecca is in a special education program at school, and doing well. She plays shortstop on the Simi Valley girls softball team, which won the tournament championship this year.

'Spirits' Tell Teen to Become Serial Killer

Brenna Wohlenberg, now 15, understands all too well the demons Rebecca and Jani face daily. ABC News has documented several of Brenna's psychotic breakdowns, in which voices she calls "spirits" tell her to become a serial killer.

Her diagnosis is uncertain, said Dr. Mark DeAntonio, MD, a specialist in child and adolescent psychiatry ward at UCLA Resnick Neuropsychiatric Hospital, told ABC News last year. "She gets very explosive and out of control. She hears voices at times," DeAntonio said. "I would say with her, it's -- there is something disturbed about her."

Brenna's family has not one but two children in the grip of mental illness. Younger sister Ailish, 14, has also struggled with hallucinations, violent tendencies and the possibilities of schizophrenia. The youngest daughter, 11-year-old Kieran, is healthy.

Brenna is currently in residential treatment in Denver, Colo., Her psychosis is well managed but mood issues are a big problem. She needs to be restrained occasionally, and deals with suicidal thoughts. The Wohlenbergs don't think she's ready to come home, but they wish she could be transferred to the facility in Texas -- Devereaux League City, outside Houston -- where Ailish landed in April when her anxiety became so severe she couldn't function. She's doing well there and has told her parents that she is happy.

Strain of Caring for Kids Takes Toll on Marriage

The financial burdens faced by these families are only one facet of the struggle. Rotating between two separate apartments has been tough on the the Schofields' relationship. The couple opened up to ABC News about the times when things have looked so bad that one or both have considered having affairs, or moving away. On the most difficult days, they admit to having contemplated suicide.

"Living apart is hard," Michael Schofield said. "We are not able to be with each other constantly and there is a lot of mixed messages. ... It is kind of like living as a divorced couple."

Jennifer Wohlenberg has lamented the strain placed on her youngest daughter by Brenna and Ailish's ailments.

Going Public With Schizophrenia Battle

"It's very hard on [Kieran], and she carries so much guilt about the fact that she is healthy," Wohlenberg told ABC News last year. "She feels this tremendous sense of responsibility that she has to be perfect. ... She is going to get a scholarship, she's going to go to medical school and why? So she can cure us."

Kieran does well in school and excels at swimming. She misses her sisters but is doing the best she can, the family recently told ABC News.

Wohlenberg says there's a reason to make the family's battle public, especially because so often, people express surprise at how "normal" the Wohlenbergs look on the outside.

"I'll describe something, then [people will] say, but you're so normal, you're so everyday," Wohlenberg said.

"And it's like, that's the whole point of this. This is why I want to talk about it because we are everyday and there are people who are struggling with mental illness in the everyday world.

"They're not these monsters that people make them out to be," she added. "They are somebody's child, they are somebody's sister and they deserve to be fought for."

And continuing the fight is exactly what these families plan to do.

"[Rebecca] says, 'I know that my mom, me and her we're fighting for me, fighting for me to be better,'" Cinnamon Stancil said. "Which, you know, makes me feel better that she knows that we're in this together."

Watch the full story on "20/20" Friday at 10 p.m. ET.

For more information on childhood schizophrenia.