I have first-hand experience raising a child with schizoaffective disorder. Up until the onset of her disorder in the ‘tweens’, I didn’t think I had the patience or backbone for coping with behavior problems. Yet the trials were so great I had no choice but to grow up inside. I learned I was patient and stronger than I thought.
Farther down this post are practical tips and guidance for helping a child with schizoaffective disorder.
My Story: Schizoaffective teens have both schizophrenic symptoms (thoughts disconnected from reality) and affective symptoms (unstable emotions and moods). I watched my child experiencing intense moods, anxiety, and confusion over what was real and what wasn’t. How could anyone have a chance of navigating adolescence with these? The sheer mental effort of holding things together was exhausting.
My child was often exasperated with me: “Mom, stop explaining everything. You don’t understand. It’s like the TV’s on, the radio’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 did not understand. It seemed her brain was processing 10,000 things at once. The mental overload would drive anyone crazy.
Hallucinations feel real when you’re in them
My child had a slow, early onset of hallucinatory experiences beginning about 11 or 12, and was able to hide it until 14. She considered the hallucinations normal and became accustomed to them. Eventually, she noticed that others didn’t see or hear the same things. For example: her friends didn’t saw the rhinoceros walking by; her mother didn’t see the sky turning green; not even the teacher noticed the words writing themselves on the white board. It was magic and only she understood. It became her proof of being special, magical, a traveler on the metaphysical plane. She was superior to others because of special visions and powers.
Unless dreams are considered hallucinations, I’ve never had one. To understand my child, I asked others who saw and heard things that were not real, and wrote an article: “What hallucinations are like, from those who know.” It seems hallucinations are like dreaming wide awake. My daughter described her amusing voices which only occurred during math class. There were two loudly arguing British ladies, with thick accents, who relentlessly criticized each other’s cooking and husbands. She said it was impossible to hear what the teacher said, and her grades went from A’s to D’s. In fleeting moments, she had outbursts of laughter and giggling for no apparent reason. This was nice though because the whole family could cheer up.
My child’s described her hallucinations. The stairs looked like a cascading waterfall. A living room chair continually rotated in space, and she had to touch it to make it stop so she could sit in it. Objects in motion 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. Her tone had an uncanny air of royal privilege. She also described being cut off from others’ reality.
My child is the bipolar type of schizoaffective person. While depressive types don’t have the highs or excessive agitation, they still suffer with the same 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 sensed the outside world as filled with evil symbols, such as certain people, certain streets, or certain names. For some reason, sunflowers and Christmas decorations were especially upsetting. Casually or seriously, she often mentioned suicide. She also read about other mental disorders, such as anorexia and PTSD, and ‘caught’ them. Consequently, she starved herself and complained of repeated nightmares.
Haunted by anxiety and paranoia
Anxiety and panic were pure torture. I wanted to spare her from the pain, but my attention only ended up making things worse She would obsess on a past emotional hurt and become horribly upset for hours, days, or weeks at a time. In frustration, I yelled at her multiple times, which (I now know) felt like physical blows. I have apologized a zillion times.
Now well into adulthood, my child continues to obsess on ancient hurts. Any traumatizing experience can become a theme in the life story of a schizoaffective person. For the rest of their lives, literally, they may refer to it and insist on accommodations. Her major obsessions were 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 and get seriously upset or irritated. It is so hard for parents to resist the urge to talk them out of it. Logic, facts, and explanations Do. Not. Work. Period. You will feel better if you ignore them and simply check that your child will stay safe. I had to learn how to “de-escalate” my child–to don a quiet and patient demeanor, affirm her feelings, show empathy, and change the subject (“redirect”). Another problem with paranoia is that it creates intense resistance to psychiatric treatment–as if others are trying to control their mind. In this case, it’s crucial to build a child’s trust and maintain it with your life. This is how you can help them accept the need and get mental health treatment.
Stalkers of famous people often have schizoaffective disorder
My child read about schizoaffective disorder, and told me that people with it 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 example of this. He believed he was the boyfriend of actress Jodie Foster in her role in the film, “Taxi Driver.” In this film, this boyfriend attempts to assassinate a president to impress her. Hinkley then did that very thing, and attempted to assassinate then-President Ronald Reagan. In prison, Hinkley 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, but they could be dangerous. An obsession and a little encouragement (such as in social media) may lead them to stalk or harm someone.
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 (electroencephalogram), request one. If there is seizure activity, it can be easily treated by anticonvulsant medication. My child did indeed have this seizure type. The medication removed some of her symptoms, such as seeing auras around people and patterns moving across 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 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. Your child could easily be manipulating you, but don’t take the chance. If you believe they are 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 was a wonderful, loving boyfriend named Dante who gave her support and made her laugh. (I’m sure most 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 of a fight with Dante. I told her to tell him, “Stop it! Don’t talk to me that way!” She did (somehow), and it apparently worked. Dante stopped talking with her for a couple of days (as if he was sulking), but returned and apologized.
Things you can do
- Create a low-key environment in the home. Low stress is a priority. Limit stressful sensory input (people bickering, harsh music, emotional movies or shows).
- Allow your child to avoid over-stimulation. They may suffer in crowds or energized spaces with too many things happening (parties, malls, sports events, slumber parties, or whatever they say it is).
- Let your child hide and isolate. It may be a form of self-care. You might check in to assess if they are mentally or emotionally safe or at peace, or engaged in something that helps them feel better.
- 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. That’s all that matters.
- Help them avoid anxiety-causing things or places. Go out of your way. This is how you will build trust. Make a point of driving down a different road, or bringing them home early from an event even if it’s inconvenient. This is respectful and humane because they are in agony about something and it doesn’t matter what.
- 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 awful loud music (through headphones), fine. Just watch. It will be obvious if it settles them and leads to a clearer head.
- 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 regularly. Hygiene is the family policy. 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. My daughter needed a whole wall to express herself. This has several benefits. Writing and drawing helps someone process and organize their thoughts. Physical touch and movement, even writing, pulls them into reality. When you see it, it helps you understand their head space. Are they exploring something harmlessly (even something difficult) like a typical adolescent, or are they veering off into paranoia or 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. It is possible to set most any boundary if done in a respectful, considerate tone of voice and 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 the promise of a snack gave her a reason to postpone an attempt 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 the article “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, which is something more challenging for ‘pure’ schizophrenia. See article at the end of this post, “Social Interaction Increases Survival by 50%.”
You will parent for the long haul so 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. You’ll have respite. Your child will eventually settle into stable behavioral patterns unique to them, and you’ll learn what they need, which triggers to avoid, and to ignore what isn’t important. You’ll also learn how to calm and settle them. Have hope. I was very flawed, but I had to help my child and learn to be a good parent.
Scroll down to read the many comments on schizoaffective disorder from parents and sufferers, or add your own story. The more you know, the better off you, your child, and your family will be.
If you need one-on-one experienced guidance for a child with schizoaffective disorder, I am a certified parent peer counselor and may be able to help. You can find out more here.
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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