Parenting Schizophrenia – Raising teens is by far one of the most difficult jobs. Throw in an incurable mental disorder like Schizophrenia, and it can be life-changing.
Randye Kaye is the mother of Ben, a sweet, intelligent young man who struggles as he enters his teen years as he is swept along by an illness over which he has no control. Ben’s illness (Schizophrenia) resulted in runaway episodes, periods of homelessness, seven psychotic breaks, and seven hospitalizations. Randye Kaye has documented the parenting Schizophrenia experience in her book, Ben Behind His Voices, One Family’s Journey from the Chaos of Schizophrenia to Hope. I interviewed Randye about parenting Schizophrenia, how she dealt with his Schizophrenia, and what help she has to offer to other parents facing the same challenge.
Lisa LaGrou of Oakland County Moms – In hindsight, what signs do you now recall from Ben’s younger years that might have been red flags concerning his condition?
Author Randye Kaye – Although there are several patterns for the development of schizophrenia, Ben showed the most common one: gradual-onset. In males, signs usually begin to appear in mid-to-late teens, a critical time in brain development (which is far from complete at birth). Before this time, as a child, Ben had some symptoms of anxiety and attention deficit, but these signs are present in many children who do not go on to develop a mental illness. I’d say that the newer signs, starting slowly in high school and accelerating by the age of 16-17, included:
- surprisingly isolated behaviors, especially in the academic environment
- mood swings beyond what my friends’ teens were exhibiting
- resistance to personal hygiene: haircuts, cleanliness
- statements that things like school grades, needing to work, etc. were “government plots” to control us
- drop in grades, inability to organize a day, get to places on time, be motivated to succeed
- marijuana use
Lisa LaGrou of Oakland County Moms – What should parents look for in their children when parenting mental disorder? When and how should they know to bring their child to seek medical attention? What are some tips for parenting Schizophrenia?
Author Randye Kaye – Any of the signs described above can look like signs of drug abuse too – or simply a “tough adolescence” – so diagnosing mental illness from these symptoms can be difficult. When these behaviors begin to get extreme – as if the teen has no control over them, and lacks the “Thermostat” to know when to stop – then it may be time to seek professional diagnosis and treatment. Research supports the theory that, caught early, mental illness can be treated before psychosis (equivalent to, say “Stage 3” in the cancer world) – and with early detection and treatment, the success rate is greater.
Lisa LaGrou of Oakland County Moms – Was it difficult broaching the subject of parenting Schizophrenia with Ben? He obviously grew to an age where he knew there was a problem. How did you first begin communicating with him about his condition?
Author Randye Kaye – It is, unfortunately, a feature of schizophrenia that most who suffer from it lack insight. In other words, they simply aren’t aware they have the disease, because the part of the brain that would inform them logically that something is wrong is, itself, impaired. This condition is called anosognosia (“a condition in which a person who suffers disability seems unaware of the existence of his or her disability”). So, although someday Ben might “get it”, right now it only makes things worse between us to “convince” him he has schizophrenia. Instead, I do my best to make sure he takes his meds. This, at least, keeps him balanced and able to function in the world. Nonadherence to medication is a huge problem, and I use every trick in the book to make sure Ben complies. This requires teamwork with other providers of his care, and communication and respect are essential between us all. When even one person doesn’t respect the need to carefully supervise Ben at medication time, the balance can be thrown way off. So – although my hope for Ben is that he someday accepts his condition and manages it himself, I also know this may not happen. I rely on “the rules” to set the tone, as is often the best way to deal with teenagers. Even at 29, Ben is still like a teen in terms of his emotional maturity. He does not want to be sick – therefore, if he can prove he can be fine without meds, he will prove it. That’s how he thinks, and if he misses a dose or two that thinking gets reinforced by his illness. So “following the rules” twice a day at med time opens to door to success the rest of the time. He may not absorb the connection, but for now following the rules will have to do.
Lisa LaGrou of Oakland County Moms – What differences did you see once Ben started on his medication, and what do you see as symptoms that are not removed with meds?
Author Randye Kaye – The right medication brings Ben back to us. Once they began to return the balance to his brain,we could see him wake up to his outside world. His sense of humor, ability to engage in conversation, and desire to succeed slowly came back. Schizophrenia, and many other mental illnesses, have “positive symptoms” – things added to the personality such as hallucinations – and “negative symptoms” – things taken away by the illness, such as the ability to plan a productive day, or relate well socially. When Ben is off his meds, he constantly talks and laughs to himself, and it takes a lot of work for him to turn his focus to those of us in the outside world. When he is balanced by his meds, his personality (sweet, kind, funny, engaging, bright, loving) shines through more easily. Each family learns the early signs of medication nonadherence, which can show up quite quickly. In Ben’s case, it’s a “delayed reaction” when we speak to him, as if he is communicating through a fog. It can also show up as over-exuberance, as if he working really hard to stay engaged with those he loves. Later in the process, his “self-talk” re-emerges much more strongly, and he paces constantly.
When balanced on his meds, Ben can work, attend school, participate in family activities, and be charming and accepted. Still – is he completely back to the way he used to be? Hardly. Medications need so much improvement. If you met Ben, you’d like him a lot when he is balanced by his current meds; however, you would still occasionally see him retreat into an inner world when his eyes dart away from the conversation. We all space out at times of course, but he doesn’t cover it up as easily as we do. He also needs to be reminded to wear clean clothes, wash his hair, etc. Organizing his life is hard for him – although he somehow manages to make the Dean’s list at college, most of his to-do list is written on his hand!
Ben Behind His Voices: One Family’s Journey from the Chaos of Schizophrenia to Hope
By Randye Kaye
Rowman & Littlefield Publishers, Inc.
Publication date: September 15, 2011.
Randye Kaye is an actress, broadcaster, voice talent and speaker. She was a popular radio personality in Connecticut for 20 years, and continues to work in theater, TV, film, commercials, industrials, and audiobooks. She is also the Connecticut trainer of Family-to-Family Educators for the National Alliance on Mental Illness (NAMI), and diversity trainer for the Anti-Defamation League.
For more info on parenting schizophrenia, please consult your pediatrician.