Life with a schizoaffective teen

Life with a schizoaffective teen 22 votes

I have first-hand experience raising someone with this interesting yet punishing disorder.  My offspring wishes to remain anonymous, and will be called “X”.  Up until my child’s onset of the disorder in the ‘tweens’, I never thought I had much patience or backbone.   But one’s character strengthens with trials, and I learned I was patient and stronger inside than I thought.  Parenting X entirely changed my life’s direction.

To others with schizoaffective children:  maybe my observations will reveal similarities in your child, and you can see the patterns of this disorder.  Farther down this post are practical tips and advice that really helped me manage the behaviors.

Schizoaffective teens have both schizophrenic symptoms (thoughts disconnected from reality) and affective symptoms (unstable emotions and moods).  What an unfair combination of experiences to sweep across one’s brain.   X had to persevere through intense feelings and excruciating anxiety, with thoughts that never touched on fact.  How could anyone maintain any semblance of normalcy during this?   The mental effort of holding oneself together was exhausting.

X was often exasperated with me, as other teens are with their parents, because I couldn’t relate:  “Mom, you don’t understand me, it’s like the TV’s on, the radio’s on, the stereo’s on, you’re talking to me, and I’m trying to read a book, and I can’t not think about every single thing.”  Right, I couldn’t relate.  I could not imagine processing 10,000 inputs at once without going crazy.

Hallucinations feel normal when you’re in them

X had a slow early onset of hallucinatory experiences beginning about 11 or 12, and was able to hide it until 14.  X considered the hallucinations and voices normal, and became accustomed to them.  Eventually, X noticed that others didn’t see or hear the same things:  the rhinoceros walking by, the sky turning green, words writing themselves on a blackboard.  To X, here was proof of being special, magical, a traveler on the metaphysical plane.  Because there was proof, X felt superior to, and more powerful than, others.

I have never had hallucinations, but imagine they are like dreaming wide awake.  X’s audio hallucinations included something out of Monty Python:  two loudly arguing British ladies, with thick Cockney accents, relentlessly criticizing each other’s cooking and husbands.  X complained it was impossible to hear what the teacher said in class.  (Even today, during summers when X is high, the stand-up comic voice visits and tells jokes to X throughout the day.  Our  family witnesses many outbursts of laughter and giggling for no apparent reason, then starts laughing contagiously.)

X’s visual hallucinations took fascinating forms:  stairs looked like a cascading waterfall, a living room chair continually rotated in space instead of standing still, moving objects left trails in space, like a series of images seen with a strobe light.

X awoke one morning with memories of life as a great ruler for 1000 years, and talked about it in extraordinary detail.  As any teen might, X preferred this reality over living with mom’s rules.

X is the bipolar type of schizoaffective person.  While depressive types don’t have the highs or excessive agitation,  they still suffer with anxiety and paranoia.  When X was in a down cycle, she darkened her room and slept in a pile of bed clothes on the floor.  X avoided things with negative symbolic meaning, such as certain people, certain streets, or certain names.   For some reason, sunflowers and Christmas were upsetting.  During depressive phases, X talked about suicide, or “caught” other disorders (e.g. anorexia, PTSD) and had memories of past horrors that never happened, including detailed descriptions of abuse.  I was most often accused of the abuse and endured many hurtful words.

Haunted by anxiety and paranoia

Anxiety and panic are torturous, and I wished I could have spared X from the pain.  She would obsess on a past emotional hurt and become horribly upset for hours at a time. (In my stress and ignorance back then, I often yelled at X unaware of how hard this impacted emotional memory.)  I must have apologized a zillion times.

X continues to obsess on ancient hurts, now well into adulthood.  Any traumatizing experience can become a theme in the life story of a schizoaffective person.   They will refer to it and make connections to it for the rest of their lives.   Big issues with X are about money (having money, people stealing money, having no control over money).   It’s common for X to interpret any event as the turning point when everything started to go downhill, “That’s when you took all my money, “That’s when you ruined my life.”

It may not be preventable.  It’s the very nature of schizophreniform disorders to find something to be paranoid about.  The point is for a parent to learn to avoid triggering the traumatic memories and reasoning or explaining what really happened.  X cannot reason once upset.  I had to learn to “de-escalate” my child, don a quiet and patient demeanor, affirm  feelings, show empathy, and change the subject (“redirect”) etc.

Stalkers of famous people often have schizoaffective disorder

X did some reading and told me that people with schizoaffective disorder often believe they are connected to a celebrity’s life as lovers or confidantes, and some will stalk that person.  John Hinkley is a famous case.  He believed he was the boyfriend of actress Jodie Foster.  In her film, “Taxi Driver,” her would-be boyfriend attempted to assassinate the president to impress her.  Hinckley did the same, and attempted to assassinate then-President Ronald Reagan.  In prison, Hinkley was diagnosed with schizoaffective disorder.  The Beatle’s musician, John Lennon, was killed by Mark David Chapman, who believed he was the rock star and John Lennon was impersonating him–Chapman is another person with schizoaffective disorder.  I was amused that X realized, only then, that her ever-present (invisible) boyfriend was a famous rock star.

Partial complex seizures can simulate symptoms of schizoaffective disorder

Partial complex seizures of the left temporal lobe (temporal lobe epilepsy) cause, enhance, or simulate symptoms of schizoaffective disorder.  If your child has not had an EEG, request one.  If there is seizure activity, it can be treated by an anticonvulsant such as Tegretol (carbemazepine).  This helped to reduce many of X’s symptoms, such as intermittent bouts of terror, seeing auras around people, and color changes in the sky.  (See an abbreviated article with an explanation at the end of this post.)

Lessons I learned

  • Don’t challenge your child’s beliefs about their experiences, even if you think they are strange, focus instead on keeping your child functional: taking meds, attending school, engaging in safe activities, and managing personal care.  You will be better able to correct/redirect their thinking once they feel comfortable speaking openly with you.
  • Believe and act on any references to suicide or destructive ideas—this may be manipulation, but don’t take the chance.   If you believe your child is being manipulative or overly dramatic, ask them respectfully to stop.  Yes, just ask.
  • Allow your child to talk comfortably about their hallucinatory experiences.  You want to know what they are witnessing or monitoring in their head.  You want to know if a voice is verbally abusing your child, or telling them to hurt themselves or others.
  • “Inoculate” your child from cruel voices or messages–teach them to deny the power of the voice or not take it seriously.  Example:  “I know you can’t stop [this voice] from pestering you, but it’s OK to resist [him] or ignore [him].  It has no power over you.”  X was upset once because of a fight with her rock star boyfriend.  I told X to tell him, “Stop it and leave me alone!”  X did (somehow), and it worked!  The rock star guy stopped talking to her for a couple of days (probably sulking), and returned and was nice to her again.

Things you can do

  • Low stress is a priority. Create a low-key environment in the home, limit sensory input, use quiet or soft voices as much as possible.
  • Allow your child to avoid overstimulation–crowds or energized spaces with too many things happening (parties, malls, sports events or activities, slumber parties, or whatever they say it is).
  • Don’t argue with them if something they say doesn’t make sense to you.  Listen attentively and avoid offering your opinions.  Let me repeat, don’t reason with someone who is inherently irrational.  Ensure they are safe, comfortable, and appropriate, and spend quality time listening like you would any other child.
  • Help them avoid anxiety-causing things or places.  Go out of your way.  Make a point of driving down a different road, or bringing them home from an event early, even if it’s inconvenient.  This is respectful and humane, and it earns their trust.
  • Ask your child what they need to calm down or settle.  If they want to be in a dark room with the windows covered with foil, fine.  If they want to listen to loud ghastly music through headphones, fine.  Just watch.  It will be obvious if it settles them, or helps them focus and relax.
  • Allow your child to be weird at home as long as they adhere to basic rules.  “I respect your freedom to be who you want to be, but you must take showers and wear clean clothes, and not yell at us.  Our family’s lifestyle requires hygiene and normal tones of voice.”  No reasoning or justification, just a simple statement of the rules everyone follows.

You can ask for, and expect, respectful behavior

It is possible to ask your schizoaffective teen to stop disrespectful or harmful, inappropriate behavior, and it is possible to set a boundary if done in a respectful manner, and without justifying yourself.

Example of something I said to X during a particularly unstable period:  “I’m leaving the house and I’ll be gone about 2 hours.  Do not try to commit suicide, stay right here in your room and be calm.  I’ll bring you a snack when I get home.”  Note that this gave X a reason to wait until I came home.

Outcomes are poor with schizoaffective people, but statistics say they have a better long-term prognosis than those experiencing schizophrenia.  Perhaps it’s because their emotional awareness gives them the ability to form friendships and relationships, and talk about feelings (unlike many “pure” schizophrenics).  See article at the end of this post, “Social Interaction Increases Survival by 50%.”

Now about you

You are in this for the long haul.  You will experience a roller coaster ride of emotions.  Pace yourself as if in a marathon.  There may be serious crises  (hospitalization) but these may space farther apart over time with treatment, and you’ll have respite.  Your child will settle into stable, repeated patterns unique to them, and you’ll learn which triggers to avoid, and to ignore what isn’t important.  You’ll also learn how to bring them back to positive states of mind, and set up a healthy environment where they choose to stay.  Have hope.  I lived this, and can attest to it.

–Margaret

How am I doing?  Please rate this article at the top, thanks.

Please add a comment about your experiences, or join the schizoaffective disorder discussion forum. Your observations will help others. 

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Complex Partial Seizures Present Diagnostic Challenge  (summary)
Richard Restak, M.D. | Psychiatric Times, September 1, 1995

Temporal lobe epilepsy (TLE), is now more commonly called complex partial seizure disorder. It may involve gross disorders of thought and emotion, and patients with temporal lobe epilepsy frequently come to the attention of psychiatrists.

A Dr. Jackson observed in the late 1800s that seizures originating in the medial temporal lobe often result in a “dreamy state” involving vivid memory-like hallucinations sometimes accompanied by déjà vu or jamais vu (interpreting frequently-encountered people, places or events as unfamiliar). Jackson wrote of “highly elaborated mental states, sometimes called intellectual aura,” involving “dreams mixing up with present thoughts,” a “double consciousness” and a “feeling of being somewhere else.” While the “dreamy state” can occur in isolation, it is often accompanied by fear and a peculiar form of abdominal discomfort associated with loss of contact with surroundings, and automatisms involving the mouth and GI tract (licking, lip-smacking, grunting and other sounds).

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Social Interaction Increases Survival by 50%

Psychiatric Times. July 30, 2010

Theoretical models have suggested that social relationships influence health through stress reduction and by more direct protective effects that promote healthy behavior. A recent study confirms this concept.  Findings from a metanalysis 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.”


32 Comments

Filed under bipolar disorder, depression, mental illness, schizoaffective disorder, schizoaffective disorder, schizophrenia, schizophrenia

32 Responses to Life with a schizoaffective teen

  1. Mish

    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.

      Margaret

  2. Mark and Kathryn

    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.

  3. Katie Marie MITCHELL

    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.

      Margaret

  4. Mame

    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.

      Margaret

  5. Leonie

    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,

      Margaret

  6. Candie

    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,

      Margaret

  7. Anna

    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.
    Thanks!
    Anna

    • 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.

      Margaret

  8. Anonymous

    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.
      –Margaret

  9. brandy

    love your website.

  10. brandy

    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.

  11. Anonymous

    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

      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,

        Margaret

    • Deanna

      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.

  12. Jay Noiman

    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.

    • 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

        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.

  13. Maria

    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!!

  14. 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 margaret@raisingtroubledkids.com.

    I wish you the very best, Margaret

  15. Skylar

    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…

  16. 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

  17. aaron

    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

      Margaret,
      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

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