Today, Jani is about to finish sixth grade and is now calm enough to leave a program for emotionally disturbed children and go into a contained classroom in a junior high school. “I never expected that to happen,” said her mother.
“The boys her age are older and bigger and some of them, because of their illnesses, have the potential for violence and aggression,” said her father. “For her own safety, that is best. It’s a huge step for her.”
She may go to college eventually, but the focus now is on adaptive life skills and hygiene, which is typically problematic for those with schizophrenia.
“It’s critical to her survival because loss of hygiene is the first step on the road to homelessness,” said Michael Schofield. “There is a disconnect between the mind and the body and they don’t feel what we would.”
Bodhi is on an array of anti-psychotic medications, as is his sister -- lithium and the antipsychotic Zyprexia. But Bodhi is not as verbal, so he cannot tell his parents what he is seeing or feeling. And events as simple as having to go to the bathroom can trigger an explosive fit.
Several times a year, when his parents cannot control his violent outbursts, the Schofields take him to the hospital where he is sedated and restrained in a “modern day straight jacket” to prevent him from hurting himself, said Susan Schofield. “The hospital says it was the worst case they had ever seen.”
The family has health insurance, but Michael Schofield has been forced to limit his teaching to online classes. They have difficulty paying the bills because for them, Jani and Bodhi are a full-time job. The couple also runs a nonprofit for autistic children, Jani’s Foundation.
“We have begged the regional center for respite care to give us some time off,” said Susan Schofield. “For just two to three hours, we could go out on our own.”
But often help doesn’t show up and there is no back-up.
The couple has had marital problems as a result. Michael Schofield had an affair, for which he “takes full responsibility.” His wife said she also blames herself for being “so tired” at the end of the day.
“Our second fear is that our children will never be entirely independent,” he said. “What are they going to do when we are dead and gone? Who will provide the support?”
Neither have extended family who could help out with the children. Michael Schofield was born in Australia and hasn’t seen his mother since he was 15. Susan Schofield’s parents are “too old to physically handle the situation,” she said.
Still, both parents feel hope about their children’s future.
“Jani has come so far,” said Michael Schofield.
“She is an inspiration,” echoed his wife, who said she is “working through” her husband’s infidelity. “We have to keep the family intact.”