I have first-hand experience raising a child with schizoaffective disorder. Up until my child’s onset of the disorder in the ‘tweens’, I never thought I had much patience or backbone. But one’s character strengthens with trials, and I learned I was patient and stronger inside than I thought. Parenting my child entirely changed my life’s direction.
Farther down this post are practical tips and advice for raising your child.
My Story: Schizoaffective teens have both schizophrenic symptoms (thoughts disconnected from reality) and affective symptoms (unstable emotions and moods). What an unfair combination to sabotage one’s brain. My child had to persevere through intense feelings, excruciating anxiety, and thoughts that rarely touched on facts. How could anyone maintain any semblance of normalcy during this? The mental effort of holding herself together must have been exhausting.
My child was often exasperated with me, as other teens can be with their parents: “Mom, you don’t understand; it’s like the TV’s on, the radio’s on, music is streaming, you’re talking to me, and I’m trying to read a book, and I can’t not think about every single thing.” Right, I did not understand. I sounded like she was processing 10,000 inputs at once. The mental overload must be why she acted crazy sometimes.
Hallucinations feel real when you’re in them
My child had a slow early onset of hallucinatory experiences beginning about 11 or 12, and she was able to hide it until 14. She considered the hallucinations and voices normal and became accustomed to them. Eventually, she noticed that others didn’t see or hear the same things: the rhinoceros walking by; the sky turning green; words writing themselves on a blackboard. She took this proof of being special, magical, a traveler on the metaphysical plane. She had attitude and felt superior to others; she felt she had special powers.
I have never had hallucinations, but imagine they are like dreaming wide awake. My child’s audio hallucinations included something out of Monty Python: two loudly arguing British ladies, with thick Cockney accents, relentlessly criticizing each other’s cooking and husbands. She said this only occurred in math class, and complained it was impossible to hear what the teacher said. Even today, during summers when she is happy, she seems to be hearing jokes throughout the day. Our family witnesses outbursts of laughter and giggling for no apparent reason. Humor is contagious, and we all cheer up when this happens.
My child’s visual hallucinations took fascinating forms: stairs looked like a cascading waterfall; a living room chair continually rotated in space instead of standing still; moving objects left trails in space, like a series of images seen with a strobe light.
She awoke one morning and described her life as a powerful queen for 1000 years, and talked about it in extraordinary detail. She had an uncanny air of confidence and royal privilege in the telling.
My child is the bipolar type of schizoaffective person. While depressive types don’t have the highs or excessive agitation, they still suffer with anxiety and paranoia. When she was in a down cycle, she darkened her room and slept in a pile of bed-clothes on the floor. She avoided things with negative symbolic meaning, such as certain people, certain streets, or certain names. For some reason, sunflowers and Christmas were upsetting. During depressive phases, she talked about suicide, or “caught” other disorders such as anorexia and PTSD. I was often accused of abuse and endured many hurtful words.
Haunted by anxiety and paranoia
Anxiety and panic were torturous, and I wished I could have spared her from the pain. She would obsess on a past emotional hurt and become horribly upset for hours, days, weeks at a time. (In my stress and ignorance back then, I yelled at my child unaware of how hard this impacted her mental health.) I have apologized a zillion times.
My child continues to obsess on ancient hurts, now well into adulthood. Any traumatizing experience can become a theme in the life story of a schizoaffective person. They will refer to it and make connections to it for the rest of their lives. Major obsessions with my child are about money (having money, people stealing money, having no control over money). It’s common for her to interpret any event as the turning point when everything started to go downhill, “That’s when you took all my money, “That’s when you ruined my life.”
Paranoia is ever-present. It’s the very nature of schizophrenia spectrum disorders to find something to be paranoid about. The point is that a parent to must avoid talking them out of their paranoia. It will never work, and both of you become frustrated and upset with each other. The emotional drain on your child can also cause intense irritability. I had to learn to “de-escalate” my child, don a quiet and patient demeanor, affirm her feelings, show empathy, and change the subject (“redirect”). The other problem with paranoia is that it creates intense resistance to psychiatric treatment–as if others are trying to control their mind. There’s more about building trust below, the kind of trust you’ll need to help them accept mental health treatment.
Stalkers of famous people often have schizoaffective disorder
She did some reading and told me that people with schizoaffective disorder often believe they are connected to a celebrity’s life as lovers or confidantes, and some will stalk that person. John Hinckley is a famous example of this. He believed he was the boyfriend of actress Jodie Foster in her role in the film, “Taxi Driver.” In this film, her boyfriend attempts to assassinate a president to impress her. Hinckley then did the same, and attempted to assassinate then-President Ronald Reagan. In prison, Hinckley was diagnosed with schizoaffective disorder. The Beatles musician, John Lennon, was killed by Mark David Chapman. Mark believed that he, himself, was John Lennon, and that the real John Lennon was impersonating him–Chapman is another person with schizoaffective disorder.
As an adult, my daughter told me that parents should pay attention to their schizoaffective child’s obsessions. An obsession might be considered harmless, such as obsessing on winning a lottery, or dangerous, such a wanting to stalk or harm someone because they your child is obsessed with them.
Partial complex seizures of the left temporal lobe (temporal lobe epilepsy) cause, enhance, or simulate symptoms of schizoaffective disorder. If your child has not had an EEG (electroencephalogram), request one. If there is seizure activity, it can be easily treated by anticonvulsant medication. My child did indeed have this seizure type in the left temporal lobe. The medication removed some of her symptoms, such as seeing auras around people and moving patterns on surfaces. (See an abbreviated article with an explanation at the end of this post.)
Lessons I learned
- Don’t challenge your child’s beliefs about their experiences, even if you think they are strange, focus instead on keeping your child functional: taking medications, attending school if possible, engaging in safe activities, and managing their personal care. You will be better able to support appropriate and safe thinking if they trust you, and aren’t afraid you will argue with them.
- Believe and act on any references to suicide or destructive plans—this may be manipulation, but don’t take the chance. If you believe your child is being manipulative or overly dramatic, ask them respectfully to stop. Yes, just ask.
- Allow your child to talk comfortably about their hallucinatory experiences. You want to know what they are experiencing. Is a voice or image tormenting your child, like telling them to hurt themselves or others? My daughter was lucky in a way. Her main hallucination seemed to me like a boyfriend who gave her support and made jokes to make her laugh. (I think many of the jokes were about me.)
- “Inoculate” your child from cruel voices or messages–teach them to deny the power of the voice(s) and not take them seriously. Example: “I know you can’t stop voice(s) from bullying you, but I encourage you to resist or ignore them or fight back. No one has power over you.” She was very upset once because her ‘boyfriend’ yelled at her. I told her to tell him, “Stop it and leave me alone! Don’t talk to me that way!” She did (somehow), and it apparently worked. The voice vanished for a couple of days (as if he was sulking?), but returned and apologized later.
Things you can do
- Low stress is a priority. Create a low-key environment in the home, and limit stressful sensory input (people bickering, harsh music, intensely emotional movies or reading).
- Allow your child to avoid over-stimulation–crowds or energized spaces with too many things happening (parties, malls, sports events or activities, slumber parties, or whatever they say it is).
- Don’t argue with them if something they say doesn’t make sense to you. Listen attentively and avoid offering your opinions. Let me repeat, don’t reason with someone who is inherently irrational. Ensure they are safe, comfortable, and appropriate, and spend quality time listening like you would any other child.
- Help them avoid anxiety-causing things or places. Go out of your way. Make a point of driving down a different road, or bringing them home from an event early, even if it’s inconvenient. This is respectful and humane because they are agonizing about something you don’t experience. You need their trust so they will listen to you and accept support that can protect them from their own mind.
- Help them avoid dangerous obsessions–Some examples of dangerous obsessions for a schizoaffective person are extremists and extremist messages of any stripe, books about negative occult practices, suicide, extreme religious beliefs, and anything that threatens the safety of themselves or others.
- Ask your child what they need to calm down or settle. If they want to be in a dark room with the windows covered with foil, fine. If they want to listen to loud music through headphones, fine. Just watch. It will be obvious if it settles them, or helps them focus and become clear-headed.
- Allow your child to be weird at home as long as they adhere to basic rules. “I respect your freedom to be who you want to be, but you must take showers and wear clean clothes. Hygiene is the family policy. This rule won’t change, but I am happy to help you with this if you want.” No reasoning or justification, just a simple statement of the rules everyone follows.
- Provide your child with a journal or large surface upon which to write or draw. This has several benefits. Writing and drawing help them process and organize their thoughts. It also helps you understand their head space, and if their thoughts reflect normal adolescents or are veering off into paranoia or potentially destructive obsessions.
You can ask for, and expect, respectful behavior
It is possible to ask your schizoaffective teen to stop disrespectful or harmful, inappropriate behavior, and it is possible to set a boundary if done in a respectful considerate tone of voice without justifying yourself.
Example of something I said to my daughter during a particularly dark period: “I’m leaving the house and I’ll be gone about 2 hours. Do not try to commit suicide, stay right here in your room and be calm. I’ll bring you a snack when I get home.” She groaned “oooh kaay”. Note that this gave her a reason to wait until I came home.
Outcomes are poor with schizoaffective people, but statistics say they have a better long-term prognosis than those experiencing schizophrenia (see “Outlook for schizoaffective disorder and schizophrenia”). Perhaps it’s because their emotional awareness gives them the ability to form friendships and relationships, and talk about feelings (unlike those suffering with ‘pure’ schizophrenia). See article at the end of this post, “Social Interaction Increases Survival by 50%.”
You are in this for the long haul. You will experience a roller coaster ride of emotions. Pace yourself as if in a marathon. There may be multiple crises and hospitalizations, but these may space farther apart over time with treatment and family support, and you’ll have respite. Your child will settle into stable, repeated patterns unique to them, and you’ll learn which triggers to avoid, and to ignore what isn’t important. You’ll also learn how to bring them back into positive states of mind, and set up a healthy environment where they choose to stay. Have hope. I lived this, and can attest to it.
Please add your own story or comment. Your observations help others. Read about other parents’ experiences, which may help you better understand your situation.
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Complex Partial Seizures Present Diagnostic Challenge (summary)
Richard Restak, M.D. | Psychiatric Times, September 1, 1995
Temporal lobe epilepsy (TLE), is now more commonly called complex partial seizure disorder. It may involve gross disorders of thought and emotion, and patients with temporal lobe epilepsy frequently come to the attention of psychiatrists.
A Dr. Jackson observed in the late 1800’s that seizures originating in the medial temporal lobe often result in a “dreamy state” involving vivid memory-like hallucinations sometimes accompanied by déjà vu or jamais vu (interpreting frequently encountered people, places or events as unfamiliar). Jackson wrote of “highly elaborated mental states, sometimes called intellectual aura,” involving “dreams mixing up with present thoughts,” a “double consciousness” and a “feeling of being somewhere else.” While the “dreamy state” can occur in isolation, it is often accompanied by fear and a peculiar form of abdominal discomfort associated with loss of contact with surroundings, and automatisms involving the mouth and GI tract (licking, lip-smacking, grunting and other sounds).
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Social Interaction Increases Survival by 50%
Psychiatric Times. July 30, 2010
Theoretical models have suggested that social relationships influence health through stress reduction and by more direct protective effects that promote healthy behavior. A recent study confirms this concept. Findings from a meta-analysis published in PLoS Medicine indicate that social interaction is a key to living longer. Julianne Holt-Lunstadt, PhD of Brigham Young University and colleagues analyzed data from 148 published studies (1979 through 2006) that comprised more than 300,000 individuals who had been followed for an average of 7.5 years. Not all the interactions in the reports were positive, yet the researchers found that the benefits of social contact are comparable to quitting smoking, and exceed those of losing weight or increasing physical activity.
Results of studies that showed increased rates of mortality in infants in custodial care who lacked human contact were the impetus for changes in social and medical practice and policy. Once the changes were in place, there was a significant decrease in mortality rates. Holt-Lundstadt and colleagues conclude that similar benefits would be seen in the health outcomes of adults: “Social relationship-based interventions represent a major opportunity to enhance not only the quality of life but also of survival.”
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