Living with schizophrenia — a mother’s story about her son and what she wants other future parents to know

Living with schizophrenia — a mother’s story about her son and what she wants other future parents to know
It’s a call that no parent wants to receive. It was a regular Tuesday when Erinn heard that her son had hurt himself at school.
“He was in chemistry class, and he just chugged a huge bottle of peroxide. He didn’t know why he did it…[hearing voices is] basically what it was. So he was Baker Acted, and that was the first time.”
Interviewed by Christina Ren, Certified Genetic Counselor
Orchid offers advanced genetic testing for couples who want their child to have the best shot of a healthy life. “Patient and Family Stories” is where we highlight families who have been impacted by chronic conditions Orchid screens for and their perspectives on genetic screening.

Putting the Pieces Together

Unfortunately, that wasn’t the last time Ricky had to be Baker Acted (a law in Florida that enables families to provide emergency mental health services and temporary detention for individuals). About 18 months later, Ricky was Baker Acted four more times within the span of a short two month period. This traumatic time was a crescendo to the years of struggle, confusion, and fear that Erinn, Ricky, and their family endured.

2-year-old Ricky with his mother, Erinn (Photo courtesy of Erinn)

Ricky was a gifted child, attending school for advanced students and spending his free time building computers. But, around age 11, his behavior began to change in ways that Erinn grew concerned about. He wasn’t sleeping, he began to talk about elaborate past lives, he was seeing people that weren’t there, and he occasionally wrote in gibberish. These changes led Erinn to take her son to a therapist. After talking with Ricky, the therapist suggested that Erinn look into getting Ricky assessed for schizophrenia. When Erinn talked with Ricky’s father, however, he dismissed the suggestion. Thus, Erinn continued to try to figure out what was going on on her own.

When Ricky entered high school, Erinn couldn’t understand why his grades began to drop. Ricky’s mood also began to change, and he became depressed and suicidal. Again, Erinn took him to the doctor, who diagnosed Ricky with depression and put him on antidepressant medication. Still, Ricky’s behavior was concerning to Erinn. Ricky began making an unusual mask and talking to Erinn about wanting to wear it to school and hurt himself. Erinn lived in constant fear and confusion, as she would find nooses in the shed and occasionally get suicidal calls from Ricky, who would tell her that he was going to kill himself.

There was a silver lining to those two months that Ricky was Baker Acted four times: with this intensive treatment, Ricky was officially diagnosed with schizophrenia. Getting a diagnosis allowed Erinn to finally understand what was going on: “It helped me become more aware of how to deal with him.”

A Family Condition

Ricky celebrating Christmas with the rest of the family (Photo courtesy of Erinn)

Erinn has a full house. As Ricky got older and Erinn had more children, Ricky’s troubling behavior affected the growing family. Erinn said, “It’s been a very big struggle; it's actually really hard for all of us with Ricky in the house.” Erinn’s other children have been frightened by Ricky’s behavior. “Sometimes they would even lock their doors at night when they would go to sleep,” Erinn said.

The diagnosis also unraveled the long history of mental illness on Ricky’s father’s side of the family. Even though there isn’t a single gene responsible for schizophrenia, a combination of genetic markers have been found to make people more vulnerable to this condition. Past studies have also shown that schizophrenia tends to run in families.

The diagnosis was also frightening. About the diagnosis, Erinn said: “It made me a little scared. Especially because I have other children in the house.” Still, the diagnosis was a means to get medical and emotional support for Ricky, Erinn, and the rest of the family. Since then, Ricky has improved his hygiene, started a long-term relationship, and started work as a waiter.

The diagnosis has helped connect Erinn to supportive resources and a community. “I was able to finally research his condition and find support groups,” Erinn said. It allowed her to support Ricky in new ways: “I began to talk with him differently; I knew certain questions to ask or what to look for.” The diagnosis also enabled Ricky to get on medication. Fortunately, Ricky could see what a big difference the medication made for his wellbeing and has stayed on it ever since.

Cautiously watchful

Even with all of this newfound support, Erinn fears for Ricky’s safety every day: “My number one fear would be him killing himself.” Living with that fear is exhausting and devastating for Erinn and the rest of the family. They all monitor his behaviors—Erinn’s kids occasionally sending her photos of Ricky throughout the day, and they make sure to keep a close eye on his mood, actions, and habits.

And having utilized every available option out there, Erinn says, “I wish there was more help for people like him.” With that in mind, she had a piece of advice for families living with schizophrenia: “Be that advocate—research and know what you're dealing with.”

Again, whenever she spoke about Ricky, you could hear how much she admires his resilience: “It is tough to live a life like my son; he is the strongest person I know, because of what he has to live through and what he's going to live through for the rest of his life.”

Perspectives on genetic screening for future families

Looking back, Erinn regrets not having pursued a diagnosis earlier. She also wishes that she had more support before pregnancy. When talking about preconception genetic testing for common conditions, including schizophrenia, Erinn said: “If I could have done it, I would have done it.”

The option for embryo screening would have also been something Erinn would have considered: “if I had the option to pick between embryos and choose the one with a lower risk for schizophrenia, I would. Because you wouldn’t want to bring someone into this world with it.”

For Erinn, genetic testing isn’t only about the future child, but also about the future child’s children. “Obviously it's in their blood, as well their DNA...And when they have kids...But if you have children, then you would at least know what to look out for.”

Erinn had a message for future parents: “You wouldn't wish schizophrenia on anyone...I would tell parents to consider doing the testing. It’s better for everybody.”

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