I have first-hand experience raising someone with this interesting yet punishing disorder. My offspring wishes to remain anonymous, and will be called “X”. 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 X entirely changed my life’s direction.
To others with schizoaffective children: maybe my observations will reveal similarities in your child, and you can see the patterns of this disorder. Farther down this post are practical tips and advice that really helped me manage the behaviors.
Schizoaffective teens have both schizophrenic symptoms (thoughts disconnected from reality) and affective symptoms (unstable emotions and moods). What an unfair combination of experiences to sabotage one’s brain. X had to persevere through intense feelings and excruciating anxiety, with thoughts that never touched on fact. How could anyone maintain any semblance of normalcy during this? The mental effort of holding oneself together was exhausting.
X was often exasperated with me, as other teens are with their parents, because I couldn’t relate: “Mom, you don’t understand me, it’s like the TV’s on, the radio’s on, the stereo’s on, 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 couldn’t relate. I could not imagine processing 10,000 inputs at once without going crazy.
Hallucinations feel normal when you’re in them
X had a slow early onset of hallucinatory experiences beginning about 11 or 12, and was able to hide it until 14. X considered the hallucinations and voices normal, and became accustomed to them. Eventually, X 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. To X, here was proof of being special, magical, a traveler on the metaphysical plane. Because there was proof, X felt superior to, and more powerful than, others.
I have never had hallucinations, but imagine they are like dreaming wide awake. X’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. X complained it was impossible to hear what the teacher said in class. (Even today, during summers when X is high, the stand-up comic voice visits and tells jokes to X throughout the day. Our family witnesses many outbursts of laughter and giggling for no apparent reason, then starts laughing contagiously.)
X’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.
X awoke one morning with memories of life as a great ruler for 1000 years, and talked about it in extraordinary detail. As any teen might, X preferred this reality over living with mom’s rules.
X 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 X was in a down cycle, she darkened her room and slept in a pile of bed-clothes on the floor. X 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, X talked about suicide, or “caught” other disorders (e.g. anorexia, PTSD) and had memories of past horrors that never happened, including detailed descriptions of abuse. I was most often accused of the abuse and endured many hurtful words.
Haunted by anxiety and paranoia
Anxiety and panic are torturous, and I wished I could have spared X from the pain. She would obsess on a past emotional hurt and become horribly upset for hours at a time. (In my stress and ignorance back then, I often yelled at X unaware of how hard this impacted emotional memory.) I must have apologized a zillion times.
X 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. Big issues with X are about money (having money, people stealing money, having no control over money). It’s common for X 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.”
It may not be preventable. It’s the very nature of schizophreniform disorders to find something to be paranoid about. The point is for a parent to learn to avoid triggering the traumatic memories and reasoning or explaining what really happened. X cannot reason once upset. I had to learn to “de-escalate” my child, don a quiet and patient demeanor, affirm feelings, show empathy, and change the subject (“redirect”) etc.
Stalkers of famous people often have schizoaffective disorder
X 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 Hinkley is a famous case. He believed he was the boyfriend of actress Jodie Foster. In her film, “Taxi Driver,” her would-be boyfriend attempted to assassinate the president to impress her. Hinckley did the same, and attempted to assassinate then-President Ronald Reagan. In prison, Hinkley was diagnosed with schizoaffective disorder. The Beatle’s musician, John Lennon, was killed by Mark David Chapman, who believed he was the rock star and John Lennon was impersonating him–Chapman is another person with schizoaffective disorder. I was amused that X realized, only then, that her ever-present (invisible) boyfriend was a famous rock star.
Partial complex seizures can simulate symptoms of schizoaffective disorder
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, request one. If there is seizure activity, it can be treated by anticonvulsants such as Tegretol (carbamazepine). This helped to reduce many of X’s symptoms, such as intermittent bouts of terror, seeing auras around people, and color changes in the sky. (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 meds, attending school, engaging in safe activities, and managing personal care. You will be better able to correct/redirect their thinking once they feel comfortable speaking openly with you.
- Believe and act on any references to suicide or destructive ideas—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 witnessing or monitoring in their head. You want to know if a voice is verbally abusing your child, or telling them to hurt themselves or others.
- “Inoculate” your child from cruel voices or messages–teach them to deny the power of the voice or not take it seriously. Example: “I know you can’t stop [this voice] from pestering you, but it’s OK to resist [him] or ignore [him]. It has no power over you.” X was upset once because of a fight with her rock star boyfriend. I told X to tell him, “Stop it and leave me alone!” X did (somehow), and it worked! The rock star guy stopped talking to her for a couple of days (probably sulking), and returned and was nice to her again.
Things you can do
- Low stress is a priority. Create a low-key environment in the home, limit sensory input, use quiet or soft voices as much as possible.
- 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 that you don’t experience. You need their trust that you” protect them from their own mind.
- 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 ghastly music through headphones, fine. Just watch. It will be obvious if it settles them, or helps them focus and relax.
- 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.
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 manner, and without justifying yourself.
Example of something I said to X during a particularly unstable 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.” Note that this gave X 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. Perhaps it’s because their emotional awareness gives them the ability to form friendships and relationships, and talk about feelings (unlike many “pure” schizophrenics). See article at the end of this post, “Social Interaction Increases Survival by 50%.”
Keep your energy in balance so you can maintain your family’s foundation. Too much spent on your child affects everything else your family needs to survive.
Now about you
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 serious crises (hospitalization) but these may space farther apart over time with treatment, 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 to 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.
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Please add a comment about your experiences. Your observations help others.
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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 1800s 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.”