An interesting puzzle: schizoaffective disorder

It's been more than 10 years since Susan's adult son was diagnosed with schizoaffective disorder and about two years since the "big bang," the moment Susan says her son finally broke down and accepted treatment — not just tolerated it, but actually embraced it.

The journey that reunited her with her son and led to vast improvements in the quality of his life wasn't easy. For years, Susan, a longtime Visalian, has committed to educating herself about mental illness and has worked tirelessly to get back the son she once allowed to walk away.

She calls him her "rescued treasure."

People diagnosed with schizoaffective disorder experience symptoms associated with both schizophrenia — such as hallucinations or delusions — and mood disorder, which includes mania or depression. Fearing the stigma attached to mental illness, Susan's son, a graduate of a Visalia high school, asked that his name be left out of this story.

Denial

Like many parents of children with a mental disorder, Susan had a difficult time accepting it. Instead of a mental disorder, she told herself that her son was simply acting out or that he was doing drugs.

"That's the hardest boat to bring to shore, that it's a mental problem," Susan said. "I personally wouldn't believe this is happening."

Her son's disorder first presented itself in his early 20s. There were never any signs of mental problems as he grew up.

"You can look really good," Susan said. "You don't limp and it doesn't show."

Susan and the rest of the family's first attempt to help their son was tough love, something she said looking back was the "most un-Christian thing we could've done."

Her son ended up on the streets. But Susan couldn't take it. She changed her mind.

"Most of the people are in the streets because their families are afraid of them, have given up on them, they've tried tough love, they got very bad advice or they just kicked them out," she said. "I truly believe there's no success story without support from the family."

One of her son's "walkabouts" while he was on the streets led him to Boise, where Susan says the extraordinary efforts of a kindhearted police officer and nurse reconnected her with her son.

Knowing where and how to start

Kent Henry, a licensed marriage and family therapist with Tulare County's Health & Human Services Agency, said it's often difficult for parents and other family members to know how to be involved with their loved one's treatment.

"These parents are hearing different ideas along the way about what's best," Henry said. "It's challenging to know how to be engaged."

Dr. Timothy Durick, the director of the mental health department, agrees — especially when the person with the disorder is a child.

"Family treatment is a large component of child treatment," he said. "There are better outcomes when the family is involved in the process."

With all patients, the goal is provide the highest level of care in the least invasive environment possible. People will typically do better in their home than they will in a hospital, Durick added.

For Susan, being involved in her son's treatment was a little more complicated because he was an adult. But despite privacy laws that could have easily kept her out of the loop, she was determined to stay involved. Her son accepted her help.

But before becoming involved, Susan needed to change the way she approached her son's disorder.

NAMI Tulare County

Susan set out on her mission without knowing exactly where she was headed, she said. There was no point A, point B or point C. She learned quickly that there's a steep learning curve when it comes to mental disorders.

The science of the human brain, she says, isn't black and white. And securing care for a loved with one with a mental disorder isn't as easy as walking into a clinic with an insurance card.

"It's a digging-in process," she said. "There's no road map."

Word of mouth eventually led her to seek help from NAMI Tulare County, the local affiliate of the National Alliance on Mental Illness.

"I kept going to meetings," she said. "I went as an observer — to listen to everybody else's sad story until you realize it's your sad story too."

But it was while attending a 12-week education course offered through NAMI — something she did twice — that her heart began to soften. None of the many services and tools NAMI provides will really help until the caregiver has experienced the same breakthrough, she said.

It was NAMI, under the local direction of Ralph and Denise Nelson, which helped Susan to view her son's brain differently.

The result of Susan's efforts to educate herself was a complete paradigm shift. The disorder she once viewed as a problem — even a curse — today is simply a puzzle.

"Once I changed my attitude and I educated myself, I found it fascinating," she said.

Susan tapped resources all over the county, filling a Rolodex full of contacts in a variety of fields — people who offered medication, therapy, advocacy and wisdom.

Every family with a mental health care consumer must do the same, she said. One phone call won't do. One visit to Tulare County Mental Health won't, either.

But for many people, finding that first step is hard, she said.

"Nobody knows about [NAMI]," Susan said. "It's insane, it's almost like a secret. It's terribly under publicized... Why the [12-week course] isn't offered by mail to everyone in a township in English, Spanish and Hmong, I don't know."

The course that Susan attended covers a wide range of topics from medication to brain chemistry to employment challenges and therapy options.

"[The 12-week course] teaches parents the language so that they can get on the same page with the therapists," said Denise Nelson, the President of NAMI Tulare County.

Armed with the resources from NAMI, Susan went about assembling the three components that she says must be a part of any road to wellness: medication, talk therapy and a loving, caring environment.

None of them were easy.

Her son received a lot of what he needed from Tulare County Mental Health.

"There is help here," Susan said of Tulare County. "It is good help and there's a lot of it."

But finding the right medication — or even the correct diagnosis — can take time.

The prescription drugs are strong and the side effects aren't always welcomed, making it difficult for a consumer to continue taking them long enough for them to be effective.

The same goes for therapists. Not all of them are the same. As with the medication, trial and error is part of the process.

Living well

Like other families who care for a mental health care client, Susan will tell you that there's no cure as there is from conventional medical issues.

But Susan's son can live a fulfilling life. He can go to school and work and make a positive contribution to society, Susan said.

His three-way treatment is working.

"The lights started coming on," Susan said of her son's progress. "He was like, 'I remember me. I was going to be a professional.' "

People who know Susan may ask whether her tremendous efforts have been worth while. She's convinced they were.

"What else could I have done in the last 10 years — seen more movies?" she said. "If I'd let him walk into the sunset, I would've never had another night's sleep ever... We're losing so many wonderful people."

This article was originally published in the Visalia Times-Delta.

(Photo: Getty Images/iStockphoto)