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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.

trapped in a bird cage

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.

Margaret Puckette parent peer counselor

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).

– – – – – – –

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.”

If you would like to get ongoing updates on the latest news and research in child & adolescent mental health, follow my Facebook Page.


  • aaron says:

    Hi there,
    I was diagnosed with schizoaffective disorder / bipolar type and generalised anxiety disorder about one year ago, at age 25. My first ever diagnoses was that of bipolar disorder with psychotic features at age 23.

    I recognize a lot in the symptoms. My visual hallucinations generally consist of people other people can’t see. I see women walking, bikers getting hit on the car, etc. Sometimes, especially at evening-time when it’s getting dark is difficult to distinguish between reality and what’s not.

    My mood swings throughout the day. I can wake up totally normal, then have a manic mood for the next two hours, be depressed after and cycle back to my normal state in just 1 day! My manic moments only last 2 hours up to 2 days. And my depressive moments only last 2 hours until 4 days. But I have VERY RAPID CYCLING! Before medication, this happened 4-5 out of 7 days a week. I think my mood has changed over the years. I now tend to have full days in which my mood is extreme. It’s kind of being more stable in a bad way…

    Anyway, just letting you know I like your website, love and peace, Aaron.

    • Sophia says:

      Thanks for your website. My 19 year old son is bipolar schitzoaffective and I only found out 3 months ago. He’s attempted suicide and been hospitalized three times. It is hard to live with this much drama and grief. What really hurts is having to deal with my son’s anger at me. He blames me for preventing him from traveling, driving, and for trying to “get in his face” too much, even though I haven’t prevented him from anything. He just doesn’t have money to do everything he wants to right now, and he’s in an outpatient program. By getting in his face he means bringing him tea in the morning and inviting him to eat dinner. He says my very cheerful demeanor rattles him. It makes me feel hated and abused, when I’m trying to be strong for him. Thanks again for creating this site. Sophia

  • Margaret says:

    Hello Aaron,
    Thank you so much for sharing your story and your personal experiences. Parents and family members don’t know what to expect or what to do for their loved one, so it really helps to hear from directly someone who lives with schizoaffective disorder, to understand what the person goes through. I admire you for being so aware of yourself and your symptoms–what you go through to manage, even in one day, is monumental! You have my full respect. –Margaret

  • Skylar says:

    I have Schizoaffective Disorder. I can relate somewhat to this post but I say somewhat because everyone’s experience is different. SD is really hard to deal with and I wish my parents were as understanding and empathetic to what we go through as you are. It’s really tough…

  • Margaret says:

    Hi Skylar,
    Thank you so much for commenting. Clearly you care that your parents aren’t more supportive, and you obviously understand that what you live with affects everyone.

    Would it help to have your parents read this article? or do you feel comfortable sharing it with them, even though it’s not quite your story? I run a support group for parents, and find that unless they’ve had first hand experience with a mental disorder (theirs, their parent’s or a sibling’s etc.), parents are very confused, and often just need to hear that their child is not intentionally difficult, that it’s not their child’s fault, and that their child needs and deserves their support. If you think they’d like to communicate with another parent, they can email me at

    I wish you the very best, Margaret

  • Maria says:

    Thank you for all the information and for publishing your experience. My son is eleven and we are still in the process of getting an accurate diagnosis, my doctor has said that he is most likelly schizoaffective. It has been very hard on our family but we remain as a team including all our close family memebers in the daily care of my son . He began showing symptoms of mental illness since the age of three and we have always been in search of the answers. It is hard not knowing how my son is going to feel on a dalily basis. But the tips you post are completelu true we have already begun practicing them and as i read them i realized that they are trully priceless in the daily rutine. It is nice knowing that we are not alone. Thank you for the hope you bring to others!!

  • Jay Noiman says:

    Thanks for the info. I have a son with schizoaffective disorder and it is by far the most difficult thing in my life to deal with. I will spare you all that I have gone through, some things are better left unsaid. Medications do help but unfortunately my son did not always want to take them nor does he really like talking about his thoughts/feelings. Psychedelic drugs and DMX have attracted his interests. It takes him to a place and escapes the reality of depression and he can experience a bit of euphoria. Unfortunately he is competing with his prescribed medications. When you are thankful for everyday your son is alive you know the pain and suffering of a parent. For all parents and sufferers keep up the good fight and keeping learning the art of persuasion.

    • Margaret says:

      To the previous commentor, Jay,
      This past Christmas, I had the best news I’ve ever had regarding my daughter: she came to visit, completely sane and clean and sober, for the first time in 10 years. She had spent those 10 years in psychosis, on methamphetamine, and surrounded by people who abused her and stole from her. During those years, I spent several Christmas’s sitting by the phone waiting for “the Call,” either from the hospital regarding a suicide attempt, or from the police upon finding her body. Something about the holiday season always caused her to spiral down. What kept me and her father going (though we are divorced) through the years of trying to help and support her were two things that are opposites: 1. Accepting and letting go, and 2. Sticking by her doggedly and doing what we could. You called this “the good fight.” So true. Whatever happens, you’ll know you’ve done the best you could. I hope you experience this with your son.

      • Anonymous says:

        Thanks for the information and good news. Methamphetamine is any parents’ worst nightmare. I would only add a couple of more comments for those parents are struggling with caretaking. Your child is dealing with a very difficult problem and other parents are dealing with harder symptoms than yourself. Parent up and keep looking for answers and keep encouraging your child to move forward. YouTube has a few posts that you may want to watch which will help you or your child understand and possibly help with your struggles. Treasure the positive points of your child. Let us all hope for medication breakthroughs, pre-birth screening or some sort of genetic intervention.

  • Anonymous says:

    My daughter began exhibiting symptoms at the age of 3 1/2! At 5 she was diagnosed with Early Onset Bipolar Disorder. Her older sister has been her target for all of her rage, and she has been verbally and physically abusive towards her for 4-5 years. Her sister has had to endure a lot, and it has changed her from the happy bubbly girl that I remember. Things came to a head this time last year when she kept threatening to kill her older sister; she put a knife in her sister’s mattress as a message, wrote evil and threatening messages about her on the windows, walls, furniture, etc. She also attacked her with a screwdriver and would hit, kick, bite, scratch her ( which she had been doing for 4 years). In fact, writing and drawing evil things on the walls was the first thing that alerted us that she had a mental illness. However, she is brilliant–could read and write fully at the age of 4, and did everything early; was the perfect baby–very quiet. Now I realize that something was brewing..she was like a “quiet storm.” The drs believe that the deaths of her grandmothers close together as well as the birth of a new sister were catalysts for her illness to emerge. Last year at this time we finally had to take drastic measures, and she was hospitalized locally for about 3-4 weeks, and then went to a highly recommended facility 4 hours from our home. She spent 7 weeks there until our insurance company kicked her out. Then shortly after arriving home, she had to return to the local facility, and after many fights and rounds with the insurance company, she returned to the state of the art facility for another 7 weeks. They changed her diagnosis to Schizoaffective Disorder, and we have seen a big improvement in her behavior, but of course, every day is still a struggle. Fortunately, the physical violence towards her older sister has subsided, but she still has a lot of antagonism and jealousy towards her sister, and has to be monitored very closely. She also sneaks food and hoardes it when we are not looking because she is constantly hungry. However, she has functioned well at school during these years–the teachers didn’t really notice anything different about her until recently. She is in the GT program and manages to make mostly A’s in spite of her hallucinations, delusions, etc. However, we have a difficult time getting her to do her homework when it is assigned rather than at the last minute, and a really hard time getting her to bathe, brush her teeth, and dress in appropriate clothing ( she is now 9). She also wants and expects new toys and/or clothes on a regular basis, and can become enraged if she doesn’t get what she wants. It has been the hardest road I’ve ever travelled, and even though she is better now than she has been in a few years, I still feel hopeless most days about our lives and her future. My poor husband had to grow up with a Bipolar father, and now he has to deal with it as the parent of a child like that.

    • Kasey says:

      Your case sounds familiar. My son who is now 10 was diagnosed with early onset bipolar disorder at the age of 4 and after three hospitalizations, two 5150 holds being placed on him and a bout of psychosis he has now been diagnosed with schizoaffective bipolar disorder. He is full of rage and the mere sight of my daughter (13) seems to set him off. He verbally abuses her and all of us daily. I cannot even tell you some of the thing he says. He has pulled a knife at her, thrown several things at her. She now stays in her room and completely secluded from us. I recently found out that she has been cutting herself and has started to miss a lot of school. My son however was always a difficult child from birth, never easily soothed, hardly slept, suffered from night terrors at a early age. He would become extremely angry even early on, if his blocks would fall down he would throw them across the room etc. He has extreme issues with personal hygeine, I have to basically put his clothes on him, still bathe him. Brushing his teeth is a complete nightmare. He gets so dirty and simply doesn’t care, he doesn’t use the restroom properly and often goes outside with no shoes on. He is constantly bruised up from climbing, jumping, falling and I don’t even know what else. He expects fast food everyday and a new toy anytime we take him to a store, and gets enraged if he doesn’t get his way. His behaviors are the same at school and he has been placed at a non public school where they can better handle him. His tests indicate he is functioning at a K grade equivalent and is in the 4th grade. I am currently in the process of admitting him to a level 14 residential facility and hope to not have insurance issues but we will see. Thank you for sharing your story, I found comfort knowing that someone else is living this very dis functional life :/

      • Hello Kasey,

        Your son’s symptoms are serious for such a young person. His issues with hygiene, anger, and violence, are best managed in residential care. Based on what you describe, if he was in my state, he would be admitted to our State Hospital (for children). You are doing the right thing to get him into inpatient treatment soon. There is good evidence that long-term behavioral therapy and continual use of antipsychotic medication can prevent or improve his symptoms.

        Right now, your bigger concern may be your daughter. If she’s cutting and isolating, she is traumatized and needs help to prevent the risk of suicide or substance abuse in the future. Your description sounds like symptoms of depression and PTSD. Puberty puts her at an increased risk of self harm. It is common for siblings of a menatlly ill child to be traumatized by the experience. She deserves a chance at the healthy life that’s been overshadowed by her sick brother. Once he is in care, she needs tons of love and support so she can have as normal a teen life as possible. This is an important time for her own social and emotional development.

        I hope you take good care of yourself. Once your son is in care, plan special father-daughter time. I didn’t realize how much my other daughter suffered until her sister was admitted, and how much she needed a parent to give her the love and quality time she needed and deserved.

        Take good care,


    • Deanna says:

      I read your story over and over, wondering how could we be living the same life?! My child is almost 8. We adopted her when she was 8 weeks old. She was a very difficult baby at first , then almost became to quite. She was adopted through social services so we always had services for her. Some I had to fight for. I always knew something was off. She to targets her older sister. It’s beginning to get very scary. She also sneaks and hordes food. Has has many diagnosis. I’m hoping to get her to ucla.

  • brandy says:

    My daughter is 16 and she has been diagnosed with sd. She has been in and out of hospitals since she was 13. We just didnt know before what was wrong with her. We just thought she is a defiant child. But when It got to the point where she tried to burn down the house and grabbed knife to kill us, she was taken to the hospita. From there she as moved to long term fecility where she is now. She refused to take meds but her increasing aggrasivness doctors told her they will have to get a legal permit to inject meds in her since than she has been taking her meds. We see a big difference. She gets supvised trips to mall and other outings.
    Eventhough she is in a good facility but me and my husband miss her so very much her being at home. It hurts so very much to think back how happy child she was. So outgoing and was so full of life. Her laughters filled out home. She was a great kid to talk to. Caring loving and everything a parent can want in a child. And now we would die to see her little smile. She hasnt smile in a while. me and my husband cry. We cry alot. We cry almost everyday. I am taking anti deprassant now. I never thought I would be relying on meds. I always been very happy and bubbly person so was my husband. We blame alot to hour self. Maybe we could have done something to prevent our daughters illness. Everyone says its not our fault. But we thing it must be our fault. We must have done something. My daughter blame us being too soft and not decpling her in a strict way like other parents. I just dont know why it happend to us. Why it happened to our daughter. What is her future going to be. Although since she has been taking her meds she is acting and behaving much better. We just hope she gets better and better. I hope to see her smile and laugh and to see her being independent and educated woman. Having her own family and enjoying life.

  • brandy says:

    love your website.

  • Anonymous says:

    Wow! I am very surprised to stumble across this blog and read so many similar experiences. For quite some time- I have felt very alone and somewhat leery of talking to others about our son’s differences because I didn’t want people to shy away from him or keep their children from playing with him. Over the years, he has been slapped with many labels (ADHD, generalized anxiety disorder, asperger’s, bipolar, and now schizoaffective at 9 years old). As most have mentioned- it has indeed been a roller coaster for me as a parent, I cannot imagine what kind of “ride” it has been for our child who has severe highs and grandiosity. He has been impulsive most of his life and on rare occasion out of nowhere- recalls things of the past that doctors and counselors say that he should’ve forgotten and gets weepy and down (his bio-mom abandoned him when he was two years old). Last summer I kept hearing what sounded like “back and forth whispered conversations”… thinking it was our two children telling secrets I was surprised to find our son alone in the bathroom. I asked him “who” he was talking to- and he pointed and said to his friend (there was no one). I tried to hide my facial expressions and retreated to my bedroom to speak with my husband. From there out, our son became more secretive. On another occasion- I heard the “back-and-forth two-way whispers” again and eavesdropped on our son who was facing his chair as if he were talking to someone. When I began to hear the two-way conversation about “murder and killing” I spoke up and asked him what he was talking about- he said nothing and denied everything I’d overheard. Our son has thrown up for no apparent medical reason for over 6 years now (he has had upper GIs, upper endoscopy, brain MRIs, EEGs, and a multitude of blood tests that all come back normal). Although he has a high IQ, he has struggled academically due to numerous cognitive deficitis, and as he has gotten older his social skills have become awkward (to the point of being ostracized and bullied). When talking to his therapists and counselors- no one could pinpoint the “reasoning” behind his repetitive episodes of vomiting. We assumed it was either performance anxiety since he did this most days before school- or control issues since everything in his life is very structured (has to be due to his inadaptability to change and also his poor memory- he has been in occupational therapy off and on). This past winter, after getting placed on antipsychotics along with an anti-anxiety med, our son finally began to communicate and explain things more clearly. It was as if the cobwebs and fog lifted. With that- also came his explanations. He admitted that he had been “seeing” and “hearing” shadow people for years. He only saw and heard them when he was in a room by himself (generally during breakfast in the mornings as I was getting ready for work). We’d always thought it was weird that he only vomited once we left the dining room- rarely in front of us. He explained why he was always looking around or staring straight ahead (things we’d noticed for years and couldn’t explain- or thought to be sneaky behaviors). He also explained a lot of other odd behaviors of his. Sadly, it turns out, according to him, he has “seen” and “heard” these shadow people for as long as he could remember. He can recall back as far as being 4-5 years old and hearing them, and says he started seeing them when he was 6 years old. He says that he was afraid to tell anyone because he was afraid they would kill him- he’ll only talk about them outside of our house. We came up with a code signal for when he has seen or heard them- during this times I have noticed him getting extremely pale before vomitting. It saddens us greatly- worries us a lot more. Since his confession, his counselor and psychiatrist have tweaked his meds and tailored his therapy sessions. Thankfully his pediatrician works hand in hand with his psychotherapist. We don’t know what the future holds for our son. For now, we are dependent on medications to control his delusions, hallucinations, and other odd behaviors. We worry about the day that he moves on into adulthood without mom and dad to micro-manage his meds and therapy. But all we can do is pray that early intervention has set him up for successful coping mechanisms in his adulthood. Thank you to everyone for sharing your experiences- it helps this mom to not feel so alone and to have hope!

    • Thank you so much for sharing your story in such detail. It sounds to me like you and your husband are on top of things, and your understanding and consideration of your sons needs are going to be help him bypass potential horrors of this disorder. Perhaps my experience with my child, now 30, may give you some clarity on what to expect for the future. You will probably be directly involved in your son’s life into his 20’s, as both supporter and case manager. Your challenge may be balancing your need to be a parent and take care of him, with your need to let go and allow him to be a self-reliant adult. I found that it helped me to understand that success for my child meant well-being, a life with meaning and self-worth, whatever that looked like for her. She’s finally on that path after years of suffering, and it feels like she came back from the dead.

  • Anna says:

    I’m mom to 11 and 15 year old sons who both have autism and schizoaffective disorder. My husband is also diagnosed with SD. Our 15 year old is fairly high functioning and stable on medication with therapy. He began hallucinating at age 5. Our 11 year old has been hallucinating since he was 3-4. He is currently so aggressive and psychotic that we can barely handle him at home. I am physically with him 24/7 for everyone’s safety.
    It’s been very helpful to hear your stories and ideas on how to work with kids like ours. Thank you all. If an online support group for kids/teens with SD ever forms, please count me in. I don’t have the time to moderate one, but I’d love to learn more from you all.

    • Hello Anna,

      There have been many comments and observations on the article on schizoaffective disorder that are benefitting other parents. I know there is precious little about the behaviors and interventions out there, and a need to discuss it and share. Your idea of an online support forum appeals to me, and I will see how I can set something up on this site.

      I wish you strength and forebearance for raising your younger son, and hope that you are getting the support you need and deserve. Take good care of yourself.


  • Candie says:

    I’m thankful I came across this site. My 16-year-old son has been struggling for four years now (although I suspect perhaps even longer). At first all of the professionals told me that he was just a normal pre-teen struggling with hormones. At the age of 14, after a suicide attempt, we were told he had Major Depression. At 15, after a detailed suicide plan, they started treating him for Bipolar. There is a fairly significant family history of mental illness and substance abuse on both sides of the family. He is currently on his third hospitalization after experiencing an acute psychotic episode. They are trying to determine if he has Bipolar with Psychotic Features or Schizoaffective Disorder. My mind is racing with questions, concerns, what-ifs, hows, and whys. I think one of my biggest concerns right now (besides getting him stabilized) is how to help him find a way to manage his symptoms and living a normal teenage life. Right before this hospitalization he was talking to himself, had disorganized thoughts and speech. His friends and other kids at school noticed and stopped talking to him out of fear. I am interested in hearing how you helped your daughter through school without her become isolated, bullied, and to avoid the stigma associated with having a psychiatric condition.

    Thank you

    • Hi Candie,

      Thank you for your story. It is a blessing that your son can attend school. My daughter could not once her symptoms became serious. She avoided stigma and social pressures by befriending “street kids”–teens and young adults with problems of their own, who accepted her eccentricities without judgment. Of course, this brought an entirely different set of dangers, and my major concern became safety.

      Perhaps you could ask your son how he feels about the social/emotional situation at his school, and what he would like to have changed. We often forget about simply asking our child for their opinion. He probably has some ideas for solutions… They may not make sense to you, or they may surprise you, yet his own solutions might work best. My lesson on asking my daughter for her opinion came from a wonderful book titled “I’m not sick, I don’t need help – How to help a loved one accept mental health treatment,” by Xavier Amador. It’s written about adults, but the idea is the same for children. Instead of trying to get someone to change something (for their own good), help them with something they themselves want. It builds trust. And it starts a relationship with your son that may make him more cooperative with your plans to spare him the cruelties of the teenage years.

      Hang in there,


  • Leonie says:

    Hi Margaret,
    Thank you for sharing this wonderful website with us, it makes me feel not so alone with what I’m going through. My son was diagnosed with schizoaffective at the age 17 and is now almost 21 the years have not been easy for us, he has been in hospital twice, the first time when he was diagnosed he was extremely violent and suicidal, he was having delusions and hallucinating, we had to have the police to come and take him away to hospital as he wouldn’t have gone himself, (he spent 4 months in hospital the first time)it was the hardest thing as a parent, but you have to do what you have to do to save the life of a child you love. The hospital which was for youth in the same situation did various tests on him and eventually came up with schizoaffective something which I’d never heard of before and I began to blame myself and so did my son, it was my fault he’d say you drove me to be like this. The second time he was placed in hospital he had decided he no longer need his medication as there was nothing wrong with him, he became very delusional and even on a number of occasions ran away from the hospital, they had changed his meds many time and eventually put him on an injection which has finally stabilized him, although he still has lot of delusions and thinks the world is going to end and talks to people who he believes are with him. He has spontaneous laughing and people look at him and judge him. We’ve lost many friends over this they have become nasty and unsupportive, due to them not understand the illness, it’s not like the flu which is something you get over or you can catch it is nothing like that and people who don’t understand can be quite cruel. It is a very long road for us, I am his carer and most of my life is spent with him on the odd occasion he does go out with his friends but sadly he has also lost a lot of friends. We have to keep the home as calm as we can as any stress seems to stress him out. Life is not easy for anyone with a child like this and it has been even harder on his younger sister who is now 15. The future we have no plans yet as long as our son his happy and comfortable that is the main thing but the hardest thing for us is worrying when we get to old to look after him, who is capable of taking over our roll

    • Hi Leonie,
      Your son has so many of the same traits as my child did before she was treated. It really is the disease, not your son, that you are seeing. Once he finds effective treatment, it will be as if your long lost child has returned from the dead. This will happen someday, have hope and hang in there.

      For many years I have conducted a straw poll, and asked people when they or their loved one finally entered treatment and made the commitment to stay in recovery. The answer was always around the age of 30. I even asked psychiatrists, therapists, former addicts, parents, siblings, those with mental disorders, directors of mental health programs… Anyone who might have a long history of observation. All said roughly 30-34.

      Pay attention to your healthy daughter. She may need more support than you are aware of. See my other posts: “Don’t let siblings lose their childhood,” and “Good messgaes for siblings (and parents) of a troubled child or teen.”. My normal daughter struggled with the trauma of living with schizoaffective disorder for years after she left home.

      Take good care,


  • Mame says:

    Margaret, I am in tears right now. Since 2009, when my then 13-year-old daughter was diagnosed during a month-long hospital stay after her first psychotic break, I have been searching for a story that resembles mine. How I could’ve missed your beautifully-written article boggles my mind.

    Anyway, in my case, the nightmare of this illness has been compounded not only by friends and family shunning us, but government involvement…Those in authority who are ignorant and overstepping their bounds (creepy Sigmund Freud wannabe school counselor who had an inappropriate attachment to my girl) or those insulted by my advocating strongly on my daughter’s behalf (group home staff) reported me and my husband to child protective services. We are now almost over the second investigation, which is being conducted by the same agent, thank goodness. She’s one of the good ones, and realizes the charges are not only false, but extremely harmful to our family. She knows how we have suffered and are still suffering due to lack of appropriate help.

    My daughter, at the strong recommendation of her former psychiatrist, was in a group home for almost nine months. My husband and I tool her out of there this past April due to staff incompetence and cruelty. They reported us to CPS that day charging us with child neglect. (I know, right?)

    Thing is, at 16, my girl does need constant supervision, needs to be locked up 24/7 and force-fed medications, kept away from the dangerous streets and those who live that life, which have caused terrible experiences for her…But she is also a 16-year-old who is brilliant, who loves and is talented in the arts, and in subjects such as philosophy, neurology and theoretical sciences. She cannot be caged like an animal in a place that treats her like an imbecile, a criminal, who ignore her tears or pleas for help when she hallucinates and is afraid, who insult her, bully her. I will NOT do that to her.

    But she now refuses all medication due to none working for her — and there were a lot of medications. The only one that worked was Seroquel, but she was a total zombie and slept for 18 hours a day on that. Of course it worked — she was too zonked to feel anything.

    She also refuses to cooperate with her therapist. She’s pleasant enough and quite chatty with her, but as far as allowing the therapist to really dig deep, unearth the many, MANY demons, it’s a no-go. She even tells us as much. She feels she can’t trust anyone. Can’t say I blame her after the awful betrayals of those she was taught to trust, those who my husband and I raised her to respect, who we assured her were there to help.

    So here we are today, first day of school. She attends an alternative program., and it did not go well last year (she was placed there after we took her from the group home). The people there are just as infuriatingly ignorant and uncompassionate as those in the group home. They have no experience with girls like my daughter.

    She spent two hours at school today, and called to inform me she was walking home because she wanted to cut everyone’s face off. She’d been in a downward spiral for the past two weeks, I assume due to dreading school. She hates many of the cruel kids there, and does not like the teachers (she loved the kids and teachers at the school she attended while in group home, and was an A student — it was mainstream). She wouldn’t ever harm another person, but when she is in this mood, she is loud, angry, and says awful things, all completely against her sweet, caring, artistic nature. That’s how we first knew she was ill: extreme behavioral changes beginning around her 13th birthday.

    I am at a loss now, at this stage in the game. I have no resources other than legal/governmental, which is the only thing offered to us. I refuse to put her in juvenile deliquency programs or have her institutionalized. But I know, in my heart of hearts, she is slipping away from us. She looks ill; she has the hardened look of a prostitute.

    I want to scream from the pain. I want to lash out at my community for the lack of care, the shunning, the blaming, the void in the mental health system, the incompetence…

    I have two other daughters, both older than her, and a son who is only ten. I want to rage at this disease for taking her from them. I want to hurt it as much as it has hurt all of us. I want to run away, and I want to be someone else, a different person who’s never known such agony. I want to be selfish and indifferent, impolite, invisible. I want this to end. I want my daughter back, my beautiful, dear, sweet girl.

    I want her back, Margaret, but I know it will never, ever happen. I know that now. My brilliant poet of a girl will never return. I can’t bear knowing she will never be happy and healthy, and at peace. I can no longer bear any of this. I can’t.

    • Hello Mame, I have such deep sympathy for your pain right now. Everything you mention has been experienced by me and most other parents I know: the grief, the stigma, the inappropriate treatment by professionals, involvement of others in your life, and the anger and pain. FIRST, recognize that you are grieving as much as any parent who’s faced the loss of a child. It is a “death”. Allow yourself to GRIEVE, get help for yourself specifically to assist you with the process, or a book on the subject. You will be better able to move forward when you emerge from the desolation of grief.

      The group home situation is not clear–was this a certified psychiatric treatment facility for children with mental health diagnoses? Were you (and her therapist or doctor) regularly involved in meetings, decisions, treatment plans? Did staff try to accommodate you or explain what they could or could not do? Were you and your husband ever included in therapy with your daughter? All of this should have happened There should also have a psychiatrist, psychologist, and RN on staff, was there? If the answers are no, there are other quality residential care centers that might really work for your daughter.

      As to the last part of your letter, know this: 1. You have not lost your daughter permanently. She is still there, and the lovely person you knew will return, but it may take years (mine just returned last year, at the age of 30!) 2. She has family support–this is huge. Research shows this is the most powerful indicator of a person’s future recovery and well being. 3. Your number one task is to heal your grief; your number two task is to keep her safe from harm, whatever that entails. 4. Make stress reduction a priority in yours and her lives–this is particularly important for the schizophrenic disorders.

      I am glad you had the strength to write your feelings. You have many reasons for hope. It will take time, but you sound like you are aware of that and willing to stay the course. Take good care of yourself.


  • Katie Marie MITCHELL says:

    My name is katie and i suffer with schizoaffective disorder (bipolar type), ocd, and panic disorder. my first hallucination happened when i was 11. Im 28 now. I heard a woman screaming this blood curdeling scream and then it sounded like someone hit her in the head with a shovel and she ceased from the screaming. I was always really irritable and in my teens i was looking into dark, depressing and just crazy stuff…. i was picked at and rejected by everyone. i often ate in the bathroom at my high school. Ive always been picked at but i have tried to love even though. I am a christian and i DO mean born again. I know that we are in a spiritual battle.( its not just delusional)! Ive often felt this evil sick feeling in my stomach and i feel this evil feeling around me sometimes. my hallucinations came back around 2004 and i have moved to atlanta. i started smoking pot while on the meds, getting drunk, sleeping around….reading a little about witchcraft and bought a ouija board…. this stuff is real!!! we are in a battle… i was into dark stuff bc i feel like i was being led into it….i dont think its just the illness! on several occasions, i could have been killed… i went to crack houses and coke houses. GOD was watching over me though bc the only thing i touched was marijuana and alcohol. I have seen a guy with gray skin, long sleeve gray shirt, dark jeans and he would come up and grab me and run off and stare at me across the room. i have heard him when i picked the phone up b4. no one was on the phone! no one was in the house! i was driving home and my car kinda moved and i felt a hand slam down on my shoulder and i could feel the warmth of his hand i looked up in my rear view and saw his eyes…. I WAS DRIVING!!! i have seen visions where people and things have disappeared and weird demonic languages were spoken. the hallucinations have placed themselves on top of real people! i was in kennesaw GA and me and two other girls, they werent schizophrenic, we heard knocking on the front door so i looked out the window and no one was there. we walked to the front door and heard it banging really loud! there were glass panels beside the door and i looked out to see who was there and no one was there. there was a small rectangle of wood flooring and carpet surrounded it. we backed up onto the carpet and heard the knocking and it stopped but then we heard foot steps on the floor in front of us. i felt someone walk past me that i couldnt see but i felt someone move past me! all of us heard it!
    i do believe the reason that we are so attracted to these things is bc we are being influenced by the demonic. I take lithium, wellbutrin, saphris, neurontin and loestrin. i take the birth control loestrin bc good ole saphris has stopped my period and given me breast milk! I dont feel good the majority of the time. i live on a farm and my daddy makes me work on it so i cant handle hardly and heat!!! I go to feeling really sick! ive been in the hospital in ga three times so far. This illness is very frightening!!!! If you look in the new testament where it talks about demons and oppression, it describes a lot of these same things. I have been taking pills everyday since i was 15 and i am turning 28 this november. what are these meds doing to us? they make me feel so sick! i cant go to the bathroom, nauseau, doesnt get rid of my irritability, shaky and weak feeling…..everyday i take this saphris i sleep for four hours then cant sleep at night! i have high chloresterol bc of it, skin is drying out, feel like i am going to fall out all of the time…. my mom forces me to work at a grocery store and the heat in ga is to intense! i have no say in my life…..”take your meds” i try to tell my mom that i dont want to work in the heat and she flat out tells me its not up for discussion! IM 28 years old! “clean your house” then she says shes going to check it! i am an outcast with my family with schizo and also my faith in my BEAUTIFUL SAVIOR JESUS CHRIST!!! I love HIM! HE IS MY HOPE!!!! all i have to do is have relationship with HIM.. and guess what? ive found my purpose it is to be known by him and to know HIM! Its to love everyone! I am trying to focus on the positive but its hard!please look to the HOLY BIBLE for comfort………… start at the new testament! :)My purpose is to LOVE people and love Christ! 🙂 i listen to a lot of praise and worship and soaking music.very soothing! i used to listen to marilyn manson (thats a NO NO!!!!), a perfect circle, and all these other bands…wanna give your kids hope???turn them to Christ! He is my hope! i do believe we are in a spiritual battle! I have and am experiencing it. dont ever give up on your kids! speak life into them!!! GODS WORD! i know its hard for the parents….i was hell on wheels…kicking holes in walls, screaming, cursing, got into a physical fight with my dad and cursed my parents before……. but when i focus on CHRIST, i have PEACE!!!! pour life into your kids and DONT give up on them! THERE IS HOPE!!!!! GOD BLESS YOU ALL!!!!! GOD LOVES YAUL!!! DONT GIVE UP!!! WE R IN THIS FIGHT TOGETHER!!!!
    Katie Marie Mitchell
    JOHN 3:16 – for God so loved the world, that HE gave HIS one and only begotten son so that whosover believeth in HIM SHALL NOT perish but have eternal life!!!!!

    speak kind words of exhortation! give them soothing music to listen to( praise and worship helps me). Dont let them watch all the garbage that this world offers. Feed on the opposite of what they are experiencing!

    • Hello Katie,

      Thank you so much for sharing your story and helping readers picture what its like to be someone diagnosed with SA disorder. Thank you for being so honest and open and unashamed to share, and for trusting that I and other readers will respect you and honor your story. Thank you for describing what’s working for you and how you manage your experiences. Those of us with a loved one with schizoaffective can’t always ask what it’s like, or even how they can help or treat the person the way they want. You must be an incredibly strong person, and your story can give us all hope. God bless.


    • Rose says:

      Thank you Katie!

  • Mark and Kathryn says:

    Thank you Margaret for hosting the Portland Support Group last night. We really appreciated the opportunity to meet others who are coping with these incredible life events. Our own anxiety to answer the puzzling questions regarding our daughter and begin to see what is ahead as a family is wrenching to say the least.

    We look forward to upcoming group events and the ability to share and learn what ‘works’ and what ‘traps’ to avoid on this journey. Keep up your good work too as a resource and parent too.

    Thanksgiving wishes to all of those friends and families who live with these challenges.

    • You are most welcome. It’s my turn to thank you for saying the one thing that a struggling father needed to get past his own emotional block. He’d been coming for almost 2 years and enjoying the company of friends who understand, but never really faced some of his own issues as a dad. Parents talking to parents is what makes support groups so valuable.

  • Mish says:

    My 15 yo daughter is schizoaffective. I believe she has had this her whole life. She has a twin brother who is bipolar. Everyday is a struggle. When it builds my own depression hits hard. My girl was homebound, her second time around, for almost a year and now we are back in school, half days. We have been homebound in the past due to a breakdown that put her in the hospital (acting out on a command from a hallucination) and then from a suicide attmept on school campus. Now, she just wants to be homebound again because I feel that she just doesn’t feel like she “belongs/fits in”. Three years ago she tested with an IQ of 113, her twin at 123. This fall she was retested and she tested at 68. She just cant open the door to the knowledge in her brain. Her daily functioning at home, common sense stuff, just is not there. It is so frustrating for me. I get overwelmed and then I feel so guilty because I am =catering to a 15 year old like she was 7, and I feel resentment. I want to teach her to be independent, but she ends up feeling like she cannot do anything right and that hurts her self esteem. So do I treat her with low expectations which makes it more manageable for her? But what if that is doing her an injustice because one day, she does start to function as a normal adult in society? I feel like I am not being the proper mother for her, because I do not know how to help her in the way that she is needing.

    • Hello Mish,

      Please do not feel guilty for thinking you should treat your 15 year old daughter like she was 7 years old. Instead, I suggest you consider it for the time being. You daughter has a serious and disabling brain disorder and it is preventing her from maturing normally. She may be literally stuck at 7. Children with mental disorders do not keep up with their peers, but with treatment (e.g. medication and therapy) they start to catch up.

      So let’s pretend she’s 7 and you want your 7 year old to grow up and be independent. You give her challenges and new experiences to help her learn and grow, but you won’t expect your 7 year old to be perfect, and you won’t pressure her either. Instead, you praise your daughter and tell her how proud you are of her. You forecast positive things: “you’ll be great at this someday, I just know it.” You are supportive: “I know this seems tough for now but hang in there!” You let her know you’re on her side and that you’ll will be there to help the whole way. This is what your 15 year old daughter needs.

      You can’t take away her feelings that she’s different or that she doesn’t fit in, at least not yet. She IS different,and this has to be OK with her and OK with you. Think of a way to redirect your thoughts away from what she can’t do to those things she can, to the gifts she has now. She can gain self-esteem if given the chance to be great at something she’s good at or cares about.

      It’s perfectly OK to lower the bar right now. She’d probably appreciate it and feel more at ease. Consider that she may be unable to be a fully functional adult in the way parents always hope. Your mission is different for now. She needs to learn how to maintain her sanity and find a life with wellbeing. Start by keeping her days as stress free as possible.

      And take very very good care of yourself too.


  • Mika says:

    I was reading your site. My daughter has just been diagnosed with Schitzo affective and Mild Autism. I feel like I am in an area where i need to research and learn as much as possible. So I am looking for any parents who have gone through having a child with both Diagnosis. If anyone an help me learn I ask that you look me up on facebook or email me at ladynajera at gmail dot com

    I totally appreciate any information that you can give me from experiences you have lived through to give me some hind sight. My daughter is 14 years old.

    • Hello Mika,

      I read in a psychiatric newsletter that there are physiological and psychiatric similarities between schizophrenia and autism; they share issues with the production/metabolism of dopamine. Apparently, the co-occurrence between the two is the highest of any with schizophrenia, 22%. My daughter had a few symptoms, most noticeably hand flapping, anxiety, and blurting out inappropriate things at inappropriate times. These were not significant enough to merit a second diagnosis however. I hope there’s someone out there who can help you.

      Don’t forget to take good care of yourself and your other family members. There is hope. You may wish to read the many comments at the end of the article titled “Life with a Schizoaffective Teen.” There are quite a few, including some from young adults who struggle with schizoaffective disorder themselves.


    • Drea says:

      My daughter has Aspergers (mild autism) and schizo affective disorder she was diagnosed with Aspergers at age 12 and the other this past April after being hospitalized for psychosis. It’s very difficult to deal with and heartbreaking every day. We started DBT therapy which is supposed to help both child and family members. Also taking a class through NAMI FAMILY TO FAMILY.

  • Kim J says:

    I believe my 12 year old has schizoaffective disorder. He is currently in an institute being evaluated and monitored. My fear is since he is so young they may dismiss that as a diagnosis even if I’m 80-90%sure. He was diagnosed with bipolar a couple years ago but I believe it was a misdiagnosis. There is history of schizoaffective, schizophrenia, border line personality disorder and bipolar in my family. What is the best way for me to make sure my son is properly diagnosed?

  • Jessica Roberts says:

    I am soo thankful to find this site. We have been struggling with our 15yr old son for years now. When he was 12 I finally had to have him hospitalized for a few months due to very aggressive behavior. He was then diagnosed with bipolar disorder. Things improved for a while once on different meds but then went back to rougher times. He is constantly getting suspended from school and doesn’t understand what he’s doing wrong. His views of reality are distorted. Bathing has been a HUGE fight for years and he is oblivious to wearing dirty clothes. I finally got him to another psychiatrist who has changed his diagnosis to schizoaffective disorder. As much as that terrifies me, it also put a lot of the puzzles pieces together. I feel horrible for having such a wrong approach to him for so long but grateful to have better knowledge now so I can help him more. Everyone’s posts have been very very helpful. I still don’t know what all this means for my son or our family but I know have some sort of hope for a way of improvement of peace for my son and our home.

  • Margaret says:

    Thanks for your blog. It resonates exactly with what I have experienced as the mother of a teen diagnosed with this disorder. The battle is ongoing and the roller-coaster of emotions is something no one who hasn’t lived it understands. We are currently struggling with finding the best meds. Clozapine does not seem to have helped the mood part of his illness. It is hard to stay positive and hopeful. Finding this site came at just the right moment. It’s reassuring to know others are living what we are.

    • Cathy says:

      Much like Margaret’s reply before mine, I am experiencing the exact same things with my 14 year old son. We are currently working on getting the right cocktail of meds, along with therapy and visits with the psychiatrist. Things came to get better after a week long hospitalization, but we are still struggling with anxiety and depression in addition to voices suggesting he harm himself. So very glad to have found this site. Thank you for the courage to share with us.

  • Liz says:

    Dear Margaret and ALL of us; Mothers with hearts that are broken in a million pieces. Here is possible HOPE- We are going to the Mensah Medical Center in Warrenville, IL. Next week July 7th, 2016. Dr. Mensah is on the Board at Walsh Research Institute. This approach is Biochemical and a Nurient Therapy. This is not a typical alternative medicine hoax. It is very scientific and has years of research that is just now becoming known. It’s based on Metabolic Status thru blood and urine tests to determine Methelation. Apparently this affects Neurotransmitters. Testing is individualized by determining all kinds of things I don’t yet fully understand such as Copper overload, etc..
    I know this may sound too easy but I have listened to at least 50 hrs. Of YouTube Videos from Dr. William Walsh(Walsh Research Institute), Dr. Mensah M.D., Dr. Judy Bowman M.D.(both physicians at Mensah Medical), Dr. Abram Hoffer, MD.(no longer living but was the pioneer in Niacin(Vitamin B3) advocate for Schizophrenia cure in 100’s of cases).
    I’ll let you all know if this is a viable choice and hope for our children. The tests take 6 weeks to come back. It’s very expensive and may not be covered by insurance.
    My daughter had a complete sudden breakdown and onset of BiPolar1, later diagnosed with Scizoaffectve Disorder. She was 18 and is now 20yrs. old.
    I’m a desperate mom on a mission.
    God bless all of you!!! We can not give up. I won’t stop searching for answers!
    xoxoxo Love from a mom who understands. ~ L

  • Heather P. says:

    My beautiful daughter is 14 and has been diagnose with schitzoaffective disorder… Mind you, until last November, we had not seen one another for almost three years. Then one day out of the with no explanation, I receive a call saying “We can’t do anything with her!”. Unfortunately, even though her and I kept contact, no one ever told me anything abnormal was happening. And didn’t until after she was back home with me and I began to notice her issues and started digging at them for answers. In the last 4-6 months the insane emotional roller coaster for me has been almost unbearable, with her accusing me of abuse and watching her go through things that are absolutely wretched and having no ability to help her….. Having to send her to the hospital several times for cutting,anger outburst, homicidal tendencies, ect… And until I came across your blog, I felt like I was going through this alone… Thank you for your sharing, please know how much of a blessing it has been to me and my heart.
    Heather P.

    • Hello Heather,

      You are definitely not alone. It’s also important to know you are not at fault; your daughter would be better if she could; and most IMPORTANT–you must take/borrow/steal time for your own self-care. Prepare for a marathon and pace yourself. Your daughter needs you to be OK. She can get better, but it will take lots of time, treatment, and ongoing communication. Even if the communication is upsetting to you, keep a bridge built and she will eventually realize you are there for her. This is what worked with my daughter over the years of roller coaster rides. If us parents can build our support network and stick it out, we can eventually rescue our children from a potentially horrible life and bring them to a place of wellbeing.


  • Maggie says:

    My 26 and just been diagnosed with schizoaffective disorder. She was initially diagnosed,at the age of 14,with bipolar 1.It is heartbreaking. She absolutely refuses treatment. She is lots of times delusional and obstinate. Her moods turn on a dime. She participates in very risky behavior. She leaves the house at night and ends up in bars or truck stops. I am so worried for her safety. I have recently hidden her keys from her. I don’t know if that’s right or wrong. I feel so helpless. Mostly I just listen to her ramble on with her delusions. What else can I do?

    • Hello Maggie,
      What you are experiencing is indeed heartbreaking. You are grieving at the loss of a loved one, but there is hope. Your description of your daughter and her risky behavior and refusal for treatment is similar to others diagnosed with schizoaffective disorder. Taking her keys, and similar actions for her safety, is the right thing to do if it you can do it without making her withdraw or disappear. I suggest reading a book titled “I’m not sick, I don’t need help: How to help a loved one accept mental health treatment,” by Xavier Amador. When she rambles about her delusions, have a dialogue with her as if you believe everything she says, and for details. Find how out she feels about her delusions. Ask questions; show her you’re listening and that you care about her needs and thoughts. You may find out ways to calm her or help her. You may also find out more about her fears when she does risky things, and you may be able to show support or offer her help to ease her fears. The point is to build trust so she turns to you when something really scary/difficult happens, and not another risky person. She may get angry and hurtful to you, but don’t let that stop you. There will be a time when she turns to you if she trusts you. This happened for my daughter when she turned 30. That age seems to be a common turning point for others with mental disorders. They realize they can’t go on and then start to seek help. You need to be that person she trusts because of all the time you showed you cared no matter what you said or did.

      • Stephanie Clark says:

        Thank you Margaret, Maggie, and others here going through all of this, reaching out for help, and trying to guide each other through this journey, albeit a very difficult one. My daughter was diagnosed at 14. We had noticed a slow “decent” from about age 12-ish….(around puberty). I thought it may be related to puberty and hormones….until she began acting like someone I didn’t know and a character from a horror movie. The most scary experience of my life. She will be 21 years old next month. She has had one baby already. I am surprised she is still alive. It has been a nightmare. What you have said, Margaret, is very good advice and helpful. Thank you for posting this article. It’s the best I’ve found in 7 years. I empathize and sympathize with everyone here. I truly do. Sending much love and prayers to everyone affected by mental illness and their families.

        • Have hope Stephanie. You will see your ‘real’ daughter again someday again, but it may take a few years. Keep a bridge built to her and her child. There will be many opportunities for you to facilitate getting her into treatment and stay in treatment. I never thought it would happen with my daughter, but it did. She still needs lots of support periodically; she can tell when she is starting to feel like that strange person she was, but takes her own steps to get help from me or others. She’s back, hallelujah.

  • Mamabear says:

    Thank you for the helpful information. Where can I find a support group.

    • If you are in the USA, an organization called NAMI (National Alliance of Mental Illness) has chapters in all states, and they offer support groups. The group I run is in Portland, Oregon. Good luck; help is out there. People care. It really helps to speak with others going through the same thing.

  • aden says:

    Hello I myself was diagnosed with schizoaffective disorder (manic type)(severe paranaoia)and now am off all meds thanks to the help of biobalance, I have been on risperidone,abilify seronace priadel,tegretol, olanzapine, as a teenager I became unwell,I used to drink a lot and brought it on, became very unwell about 5 times, only got sense when I got older,I am now 31,last relapse was about six years ago,I was very unwell from meds from side affects,I was developing movement disorders,I felt I wasn’t living only existing and very suicidal. my doctor strongly advised me not to go off meds that I would become unwell if I did,I looked for alternatives and heard of biobalance, they done blood and urine samples,test results showed high copper and pyrolls ,I was put on nutrient based therapy, as time went on I weened myself off all meds against docs advice,I still kept going to appointments,as time went on I came on in leaps and bounds,I had not felt as well in years,six months later phys discharged me and said I have never seen anything like it and keep doing whatever you are doing,I am now two years off meds and doing very well,I just liked to put that out there to show that there is hope and to not follow things blindly and to think outside the box.

  • Lori says:

    My son had an episode of psychosis one month before his 24th birthday. He was admitted to a psych hospital for almost a month and given abilify. 5mg for 1st week then upped to 10mg. He quit taking the meds because he said it made his brain feel like it had shards of metal in it. I don’t quite know what that meant, but either way, it didn’t feel good. We’re now 6 months from the psychosis episode at which time he thought my husband and I were not his biological parent’s and he and his 3 brothers were genetically modified by the government and placed in our care. These thoughts subsided before he left the hospital but he still disliked me especially, his mom. He spoke fine most of the time with my husband, his dad, but was extremely angry and bitter towards me. I had been disgnosed with breast cancer as well as my father in-law with lymphoma within the same week in Aug. 2015. Which was approx 8 months prior to his psychosis. His grandfather died one month after diagnosis and I started chemo in January. I had some tough days with chemo that he saw and I think this took a terrible tole on him mentally and caused the psychosis. He worried a lot growing up and i think my cancer though very early and great prognosis, was unbearable for him. He has good days at times but also a lot of days where he doesn’t want to even hear my voice and very moody. He used to hang out and go places with the brother closest to his age but this has pretty much stopped. Now, he likes to usually go places alone. He applied and got accepted to go back to college in the spring. He left first semester senior year after mono. He is starting to talk low and giggle to himself at times. I wish like so many others to have my son back. I have hope but also feel helpless at the same time. There is so much more I can say but it would take so much time. His 3 brothers feel like they have lost a part of them and desperately want him back. We all do.

    • Hello Lori,

      You have my deepest sympathies. It sounds like every damnable thing that can happen to a family and parent is hitting you all at once. I went through a similar period, and experienced a flood of fear, stress, and loss–not cancer, but my own mental health problems. You are not alone, but know that you are not at fault either! Your son was vulnerable to stress from the start.

      People who start manifesting an illness with this diagnosis have a genetic propensity towards psychosis due to stress. If not your cancer, something in life would have lead to this. It’s like our children have a weak psychiatric ‘immune system’ and easily ‘get sick’ from stress. Sometimes the signs are there from a young age, often it starts around puberty (like my daughter), and often it starts in young adulthood. The hardest thing for the family is witnessing the loss of a loved one who had already launched into life.

      Recognize that you all are experiencing true grief. The son you knew has ‘died’ and there’s this troubling person in his place. But this is really important; it’s not permanent. He’s in there, but currently imprisoned by a disease that’s no one’s fault. With steady family support, your son will return. He won’t necessarily be cured, and he may always need support from time to time, but he’ll be back. It may take months or years of a roller coaster ride, so pace yourselves.

      Some ideas for now:

      — Accept your path through the stages of grief; it always leads to a place of peace. The stages may reoccur in no particular order: denial, bargaining, anger, depression, acceptance. This is normal for families like ours… any family with a loved one who is gone. And your son hasn’t really died, he’s been kidnapped, so he has a second chance.

      — Take actions that support you and your other sons, significant actions: a getaway, regular opportunities to laugh together, exercise classes together, etc. Schedule these in your life like you schedule doses of medicine. They ARE medicine.

      — Read this book: “I’m not sick, I don’t need help: How to help a loved one accept mental health treatment.” Author is Xavier Amador, MD, a psychiatric researcher who found a way to help his schizophrenic brother.

      — Find social support. Don’t be afraid to ask others for a shoulder to cry on–these are the kind of people who won’t judge or push advice, but just listen and reassure. If you live in the U.S., find a NAMI chapter near you (National Alliance on Mental Illness, I know other nations have similar support and advocacy organizations for helping families and those with disorders.

      Take good care and have hope. You are not alone; you are not guilty; you will make a difference.


  • says:

    Informative article… I am having the same issues with my 14 yr old daughter…. I wish I could go into detail but it’s almost impossible to decribe..

  • Darlene Merz says:

    Oh thank God for your words. Very help full. I like knowing my daughter has hope. Yes there is still hope for my baby.

    • Hello Darlene,

      Yes, there is hope for your baby. Be advised that she may not become the person you thought she might be. Her brain disease will change her. If she gets and maintains treatment, which includes more than just therapy and medication, you will see the child you gave birth to.


  • Chrystal says:

    My son is 16, soon to be 17. He has no “friends”, he doesn’t drive. He doesn’t have a girlfriend. And he is always alone. I really wish I could help him get “intouch” with a social side. But I know I can’t force him.
    What can I do to boost his self-esteem? He has no want to do anything.
    And he is such a wonderful, kind hearted person. He isn’t a trouble maker. And he is always there for the “under dogs.” I just love him so much and it breaks his dad and my heart to see him so alone.

    • Hello Chrystal,

      Has your son been evaluated, either by a therapist, psychologist, or psychiatrist? Do you think he may be experiencing a schizophrenia-type disorder? Do you think he might be autistic? Both have similarities. If he is willing to visit a mental health professional, or take a diagnostic test, you might get your answer. Sometimes just knowing what’s wrong is really helpful. Then you can make plans for increasing his wellbeing in general.

      If he has one or another of these diagnoses (it sounds to me like he does but I am NOT a doctor), you might find it reassuring to know that his behavior is ‘normal’ for people like him. Let’s look at the social side: 1. people with a schizophrenic-type disorder are trying to process so much weird stuff going on in their heads, that it’s overwhelming to handle interacting with someone else. They need to be alone–there’s more peace, less pressure, less uncertainty, less anxiety about being seen as weird; or 2. people with an autism-type disorder are neurologically different. They think in pictures and data, which are certain and tangible and unemotional. Social interactions include ideas and feelings that they can’t readily comprehend, and it can fill them with anxiety and frustration. Again, being alone feels more comfortable, or safe, or less anxious. Don’t be afraid to ask him if he likes being alone. This might be perfectly OK as long as he is safe.

      You said you are worried about self-esteem, and then you wrote he is kind hearted and “always there for the “under dogs.” This is how you might help his self-esteem. Find a way for him to help others who are “under dogs.” Here are a couple of ideas, but this really depends on your son. Trust your judgment; you know him best.
      –read to a child or group of children; sometimes libraries need volunteers, and reading to a child can be a social interaction he can handle
      –volunteer at an animal shelter
      –volunteer to assist an older person with chores, or at a senior community
      –depending on his gifts, he can be guided to the arts or crafts: poetry, writing, visual arts, model building, things he can do alone or with his hands

      Get him evaluated. There is a lot of information about how to improve the symptoms of schizophrenia or autism (or whatever he may be diagnosed with). Then you can provide support and help that’s customized to his condition. Have hope. You and his father’s love and support are the most important things he needs to be well in life.


  • Poohb3ar says:

    It is really quite relieving to know that you aren’t alone….. My daughter was diagnosed with Schizoaffective and a laundry list of other things recently. She had her first psychotic break at 10 years old….
    She is a sweet girl who has had her whole world turned upside down. It breaks my heart to not be able to ‘fix’ it for her, to not be able to make her better. I really really am glad to know there are others out there who deal with this too. We have found it very hard to find a therapist who can see her and treat her for this disorder because of her age and because she is so young. Apparently that is rare, and until I found this blog, I felt like we must be one of may be 3 people in the whole world who have a young child with this diagnosis.
    As of right now, and prayerfully it stays this way, she doesn’t exhibit the violence and aggression and anger that a lot of others above posted about. So that is something to be thankful for.
    But my heart hurts as her mommy to not be able to make this better. I need to do more research and learn more about this disorder in childhood and I need to find her a therapist who views me as apart of the team and not ‘just the mom’ as I was called by her current therapist.
    Resources anyone??

    • Hello Poohb3ar,

      It is sad when families feel alone because they need each other for support, but it’s common to be isolated. I’m glad you’ve found some insights in the comments to this article. You mentioned difficulty finding a therapist for your young daughter. Have you found a Child & Adolescent Psychiatrist? They specialize in treating disorders of children of any age, up to 18. If you can’t get regular therapy from a psychiatrist due to costs or insurance limitations, one may be able to refer another professional (psychotherapist or psychologist) who specializes in treating children. When you contact a potential provider, ask about this upfront: Have you ever treated someone with schizoaffective disorder? Have you ever treated a child this age? Do you include family members in treatment when appropriate? Do you assist the family with advice for supporting the child at home?

      About the potential for your daughter to be violent or aggressive: the very best thing you can do as she grows is to maintain trust and honest open communication with her. Your Number One goal as her parent is to teach her how to identify and manage her symptoms, and ask for support. She will need to do this the rest of her life. Any parent would teach medical self-care to a really sick child. Make her illness a ‘normal’ conversation. As she enters her teen years, she needs to understand it’s OK to be different (she *will* notice); it’s normal to have problems as long as she chooses to be safe and asks for support. She will need to accept responsibility for her disability in adulthood, and you can start setting her on that course now.

      Last, be sure to get help for yourself when (not if) things become overwhelming. You also have a Number One goal–to be mentally healthy and emotionally resilient. This means you too have to make extra effort for exercise, sleep, social support, personal time (a vacation), healthy diet… and maybe therapy or antidepressants. Believe it or not, mental health support is common for parents like us.

      Good luck,


  • Kirsten says:

    It is great to see this site becoming active again. I found it 2 years ago and reading this article and the comments helped me with my journey. My son was diagnosed with schizoaffective disorder 2 years ago, after a rough few years of the unknown. We’ve had another 2 years of meds that are finally helping. His life and the path we anticipated changed dramatically. But he’s alive and we’re still a family with a whole new path ahead of us.

    • Veronica Edens says:

      Thank you for sharing your story with us. My son was diagnosed with autism when he was 3 years old. He is also moderately mentally handicap. He is now 16 and turning 17 this week. – 3 months ago, the hallucination and delusions started. He was admitted to the hospital. They couldn’t get the hallucinations to stop, so they moved him to the residential side of the facility. After 1 month of being there, he was found unresponsive face down in his feces and was rushed to the hospital where he stayed for a week. The medicine (haldol) attacked his muscles and made it to where he couldn’t walk or speak. His tremors were so violent. Finally after a week, he was released back to me where after 2 days, he became confused and disoriented. Due to his diagnosis, i had to take him back to the hospital and make sure he wasn’t going backwards in his treatment. While there he flipped out and they did a psych hold on him. He was sent to another facility for 2 weeks. Now he is home but he is still hallucinating. I don’t know what to do. He seems withdrawn. Hes not acting like my son at all. He wont tell me about what he sees or feels. Hes not good about that stuff due to the autism. I’m constantly worried he may run and get hurt. We slept on the couch all weekend because i wanted to make sure i heard if he got out of bed during the night. What do I do? They say he is not manic right now but some of this is possible baseline.

      • Hello Veronica,

        I’m so sorry your son is experiencing so many difficulties–no child should endure what he’s enduring. Your email left me with many questions about the mental health treatment he’s been receiving and whether it’s making him worse. I am also concerned that the medical facility is not being clear or honest with you about his situation. First, I am stunned that someone in their teens was put on Haldol. His side effects seem like the dose was too high for too long, and that it was suddenly ended. Is this an adult mental health facility or one that specializes in children? Your son needs to be seen by a child & adolescent psychiatrist–teenagers are different than adults!!! Abruptly stopping the Haldol or some other drug can cause seizures and tremors. I am not a doctor and I don’t know the details, but his serious hallucinations make me suspect he is not getting the exact medications he needs. Can you get a second opinion?

        His withdrawal and the fact that he’s not acting like himself sounds like the onset of schizophrenia and not bipolar disorder or mania. Unfortunately, the combination of schizophrenia with autism is common, about 1 in 5. Schizophrenia can cause someone to be very withdrawn, to show little or no emotion on their face, seem preoccupied or distracted and unpredictable, and to be uncommunicative (more than autism alone).

        If this was my child, I would do three things:
        1. Find a different doctor who is trained in child & adolescent psychiatry and get a second evaluation, and insist the doctor explain what he/she is thinking, what they are planning and why, what you should expect to see, and what kind of environmental he needs at home for best functioning.

        2. Seek out a NAMI Chapter in your area (National Alliance for Mental Illness, Call them for information on what families can do to help a loved one with severe hallucinations, possibly due to early onset schizophrenia. Find other parents like you and talk to them for their ideas. Someone will support you, which is something you need.

        3. Safety. You are wise to keep an eye on him. Try to rearrange your home or make other changes to keep him safe and ease his symptoms. He needs reduced stimulus, and perhaps this means not trying to get him to talk to you so much. You may also need to lock some doors; provide a quiet dark place for him to be in if he wants; reduce noise or chaos; play pleasant music; get him to write or draw; or anything else calming.

        Please let me know how it goes. And for goodness sakes, please do things to take care of yourself. Take care,


      • Hello again Veronica,

        I thought of something else: could your son be using (or has used) marijuana? This could explain the early onset of psychosis and intensity of hallucinations. Marijuana is a seriously destructive drug for children with mental health issues.


  • lesielimafi72gmailcom says:

    Wow sounds like you just stole my story only I am going through it now thank you for sharing there is light at the end of the tunnel

    • Thank you. Welcome to the schizoaffective club! There is light at the end of the tunnel, but be prepared for a long tunnel. Stay strong and take care of yourself. Your child will recover.

      There is one thing I can’t emphasize more strongly, if you can, keep your child away from marijuana and people who use it. It triggers psychosis. Users think marijuana is good for them, but for those vulnerable to psychosis, it worsens depression, anxiety, paranoia, and hallucinations. It really set my daughter back.

      Take good care,


  • Ross says:


    Ross here, my not biological daughter, was diagnosed for schizoaffective disorder. She’s currently taking medication. The problem is, most of the times she throw things and break things. Also when she’s angry, when we stop her or follow her she punched us. Kindly help us what to do.


    • Hello Ross,

      I’m sorry you’re experiencing such difficult behavior. You didn’t say how old your daughter was, so I’m going to assume she’s in the teenage to early adult years of age, like about 16-24. This matters because of the approach you might need to protect yourselves. People with schizoaffective disorder aren’t usually this physically violent but it does happen; these other things may be happening to worsen violent tendencies.

      1. The dosage of her meds is not high enough, or she needs an additional one, or she’s not taking them at all (and faking it). A visit to a psychiatrist and blood test will help identify what’s needed. Stopping medications and pretending to take them is unfortunately really common. There are Long Acting Injectables (LAIs) which are antipsycotics that are injected once a month so the person does not need to take pills. This is how one can assure the meds are in her system.

      2. She is using an illicit drug like marijuana (THC) or meth or drinking alcohol. This must be stopped ASAP! The meth and THC in marijuana is ESPECIALLY bad for anyone with a schizophreniform disorder!. Check out this page: “Marijuana-is-dangerous” .

      3. She has a trauma history or another co-occurring medical problem (thyroid, latent strep infection). If she allows it, further medical testing and counseling may help.

      4. She is experiencing a bipolar mania or hypomania phase, which can make people very irritable and angry. This is where the addition or removal of a medication may help. For example, someone with mania-type symptoms should never be on an antidepressant!

      5. She is not getting enough sleep. The change in seasons, especially spring and fall, can affect irritability and anger. Her daily sleep should start and end at the same times. She needs a cool, very dark room. A sleep aid such as an antihistamine like diphenhydramine may help.

      Can you identify any of these and address them?

      Now the difficult stuff: protecting yourself and property from violence and damage. You may need to fortify your home by removing or locking up the things she likes to throw at you. You may also need to barricade yourself in a room with a lock on the inside. It is legal for you to protect yourself from harm. You can call the police and report property damage and assault, or even charge her for assault, or get a restraining order. Parents I know with a violent schizoaffective daughter had to do this many times. This got her a court-ordered commitment and treatment. The daughter is better but it took years. Not an easy road.

      Please write again if you have more information or have found any of these things to work. And please take care of yourself on this difficult road. It takes time, and you’ll need breaks that nourish your heart and soul.


  • My journey with my daughter’s mental illness began when she was 12. Before that, she had hallucinations and experienced the grandiose ideas that went with them, and frequently heard things. This was always, to my family, because she was ‘creative and spontaneous, living in the moment.’ But when she started middle school, the transition from the school life she’d had since kindergarten to a larger classroom, multiple teachers, and harsher expectations turned her voices into critics and she became suicidal. That was our first hospitalization. It was terrible. She realized immediately that she couldn’t confess what things were really going on with her and played it all off as a manipulation to get out of school. She was diagnosed with ADHD and Anxiety disorder with Major Depression. We couldn’t find a counselor she liked or trusted. We just sort of ‘existed’ with her manic periods and depression, and she shut down on us.

    I divorced her father prior to her starting high school, and she stayed with my mother due to her father’s erratic behavior at the time. My mother took her to a psychiatrist who spent a few hours with her and diagnosed her as having Bipolar, Rapid cycling, most likely caused by childhood trauma. The meds he prescribed brought her closer to the child I had, but there was still something ‘off’. She was hospitalized after starting high school, and again talked about voices, seeing things. She was hospitalized a week and came out on almost all new meds, except her mood stabilizer which was working less and less – her mania would result in us getting up to find she’d painted her lights in her room to get different lighting, or weird things etched into walls in the middle of the night. She would come running upstairs thinking we’d called her when the house was completely silent, and talked about seeing bright flashes of lights, or animals, and insisted that someone was tapping on her window at night. I encouraged her to talk about it but also emphasized they weren’t ‘reality’ and weren’t something any of us were experiencing.

    Finally, last year, we took a 4 hour trip to see a psychiatrist out of town. Her counselor of 3 years (who knew what she was hearing and seeing but couldn’t disclose to us because my daughter wouldn’t allow it) encouraged her to be entirely truthful with that psychiatrist. I reiterated that admonition. I was terrified of being told again she wasn’t bipolar (I had several doctors and one psychiatrist tell me I didn’t know what I was talking about when I talked about her mania and it’s effects, and working in the mental health field myself knew exactly what real mania looks like) and being taken off the mood stabilizers that I felt were all that stood between my daughter and a very long term hospitalization. This psychiatrist did about 4-5 hours of serious testing prior to our appointment (done online) and then spent 3 hours talking with first my daughter, then me, and then us together. She explained she felt my daughter had schizoaffective disorder, bipolar type, and then proceeded to explain what it was, and what supported that diagnosis. So many lights clicked on for me. Things from her late childhood and tweens began to make more sense.

    We started her on an antipsychotic. We worked on diet changes to control the fact that she would put on weight and maybe have problems with cholesterol due to that med – she went from barely 90 lbs to now being 137 lbs, which is still a very healthy weight for her height (and she looks like a young woman instead of a very tall prepubescent boy). She sees her counselor, and sees the psychiatrist every 3 months. Her moods are much more stable, although we have seen some depression and self-harming creep back into her life under stress. She isn’t attacking people verbally, and talks openly about her hallucinations and delusions, most of the time clear that it is part of her mental illness.

    Recently, she decided to try and live with her dad a few states away, and we’ve spent a ton of time educating him on her needs and her meds and her issues. She will move close to Christmas, which leaves me one more month to get things situated for her from my end. However, the transition is truly taking a toll – it’s stressful for her, and she texted me this week from school and said that her primary ‘friend’ is back, and it’s clear that she is slipping into the hallucination and delusions again. I knew that the stress would affect her (it always does) but was hoping the meds would keep the worst at bay. I don’t challenge her delusions often – it does little good when she is very psychotic – but she also needs coping skills for when I am not around and her support system takes time to get in gear. She will never lead a normal life in the sense of being free from her delusions and hallucinations and making decisions completely based on the things we do, but my hope is that she will, with the right supports, lead the life SHE wants to – one of creativity and happiness and good relationships. To me, that means teaching her the skills to recognize the need for reduced stress, and when life throws stress at her that she can’t avoid, to make the right choices to reach out for support, or at worst to get herself into a hospital until she can help herself again.

    I’ve read the statistics on schizoaffective disorder, but I’ve also read a lot written by people in their 30’s and 40’s who have schizoaffective disorder and have wonderfully meaningful lives punctuated by periods where they aren’t coping so well. I have more hope for her than ever before – Bipolar statistics are abysmal compared to those of the schizoaffective world. I believe her mind (and those affected by this illness) is a special and unique creation, and that she can live a fruitful and largely happy life. To me, honoring her experiences so that she doesn’t have to hide them or argue about them, is a large part of her accepting that she is both special and different, and that she will have problems from time to time. I normalize her moods – because while ours (those of us without schizoaffective or bipolar issues) may not be as extreme, all of us have reactions to stress and our moods fluctuate. I help her recognize when she may be manic, and we talk about what’s going on in her life at school and with friends. I force her not to lock herself away when she starts entering a blue period. I encourage her to talk about her voices and her visuals when she has them and to recognize they are a reaction to stress – I don’t deny them, but I also point out when she is doing well they aren’t as pressing and attention grabbing. I don’t try force her out of her times of grandiose or agitated mood – but I do ask her to give herself frequent time-outs to minimize that agitation. As a social worker, I emphasize self care for all around me, but I probably hammer it home to her a little more than most.

    I worry about her future. I worry about her medications. I worry about her relationships. I worry about her functioning as an adult in the near future. I worry about so much, and part of the exhaustion that occasionally hits me as a parent of a special needs child is that I will never stop worrying about her until my last breath. If there are such things as ghosts, I may be one until she draws her last breath. I worry about her little brother with his own issues, and being a good and present mother to him while still giving my daughter the care she needs. I love her, and like all parents, I want to see her have a life that is what she wants it to be – and I worry that without constant care she will end up homeless and ill and dying too early. But I keep trying to hope, and her meds and her resilience help me keep up that hope.

    • Hello angelredeemed,

      Thank you so much for your detailed and well-written article about your experiences with your daughter. You seem to be doing all the right things that a parent can and should do for a child with schizoaffective disorder. Below is a summary of your strengths for others’ benefit. Your experience can help others:

      — accepting that this horrible condition is your and your daughter’s reality now, you not in denial, and you don’t have unrealistic expectations
      — holding professionals accountable, and continuing to search for ones who listen to you, take the time to gather all the facts (your reports as well as hers), and settle on a diagnoses that accurately fits the symptoms you observe
      — keeping open a line of communication with your child such that she feels safe talking with you about what she experiences
      — staying alert to warning signs, and proactively acting to reduce symptoms of concern
      — finding hope in other people’s personal stories
      — addressing her need to self-manage in adulthood by learning new skills
      — recognizing her strengths, such as resilience
      — recognizing the situation’s negative impact on her sibling

      I hope you are finding the time for self care, and quality time with her brother. As a social worker, you understand what everyone needs intellectually, but boy, it is ever different when you’re not a client but a parent!

      Thanks again for sharing your story.

      Take good care,


  • Rozamond says:

    This lifelong illness can affect all areas of a person’s life. A person with schizoaffective disorder can find it difficult to function at work or school. It also affects people’s relationships with family, friends and loved ones.Many people with schizoaffective disorder have periodic episodes. There are times when their symptoms surface and times when their symptoms might disappear for a while.

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