Category: schizoaffective disorder

What’s in your troubled child’s future?

What’s in your troubled child’s future?

Are you scared for your child’s future? Is he or she is falling behind? On a scale of 1 to 5, where 1 is “Normal” and 5 is “Worst Case Scenario”, what will your child’s adulthood look like?

This chart depicts a spectrum of outcomes of children when they are adults.  No matter how ill your child is, if he or she gets support and treatment early, their future adult life should avoid the last column.  A network of family, friends, and professional staff can keep them from the worst-case scenario in the far right column, and even move them in the direction of normalcy.  There is research evidence for this.

“Wellbeing” is very important.

 

This is a checklist of childhood problems that lead to poor life outcomes as adults.  Jump on them one by one.

  • Friend problems:  they have inappropriate friends, or no friends, or they mistreat friends (and siblings).
  • Behavior problems:  they do or say disturbing things (swearing, hurting, breaking, manipulating, sinking in depression, attempting suicide…). Everyone is stressed.
  • School problems:  disruptive behavior; poor grades (or a sudden drop in good grades); bullying or being bullied.
  • Health problems:  physical health problems become mental health problems, and vice versa:
    • trouble with sleep
    • digestive system and gut problems
    • poor diet and lack of exercise
    • epilepsy or neurological disorders
    • hormones during puberty
    • substance abuse.

We designate legal adulthood between the ages 18 and 21.  That’s too young.  Many normal healthy young people at this age are immature and irresponsible, but your son or daughter may lag well behind them.  Your child may need support and rescuing well into the 20’s or early 30’s–this is not unusual.

You’ll survive the marathon of tough years by pacing yourself, finding support for yourself, and protecting your mental health.

There is reason for hope.  Your child may take many horrible directions in their teens and 20’s, and you may feel hopeless or helpless as you witness their life nosedive.  If you can hang on and marshal support, your child will find a circuitous path to recovery.  It will have sharp turns and back steps and falls, but they’ll find it… and enter stable adulthood.

Some parents and families have seen the worst.  They’ve endured violence due to their child’s addiction; sat in court when their son or daughter was convicted of a crime; or they waited in the Emergency Room when their son or daughter was admitted for psychiatric care.  They also lived to see their child achieve the sanity to finish their education, support themselves, develop good relationships, and get that future you always wanted for them.

How two parents handled a “worst case scenario” and supported their child’s wellbeing:

These are true stories of mothers who stuck by their very ill adult children and provided what little they could to bring a bit of wellbeing.  These mothers found some peace by simply doing what they could.

One had a grown son with schizophrenia and a heroin addiction who lived in squalor in supported housing.  He spent all of his disability assistance money on heroin and nothing else.  Her efforts to help him met with verbal abuse and threats of violence, and she feared for her safety.  What could she do, witness his slow suicide by starvation or overdose?  She arranged to visit him once a week in the parking lot, and brought 2 sacks of groceries in the trunk of her car.  He was to come out and get the groceries while she stood at a safe distance.  This worked.  He was still verbally abusive when he got the groceries, but he got food and she stayed safe.  Did he have wellbeing?  Was his life humane?

He lived indoors
He had enough food and clothing
He had encounters with social services and police, which led to some health care
A support system was available if he was ready for help.

One had a son addicted to methamphetamine who was lost to the streets. One day, she discovered a nest of old clothes and rags in an overgrown area behind her garage, and instinctively knew it was from her son.  “Good,” she thought, “He’s alive; I can keep him safe.”  She rarely saw him come and go, but she replaced the rags with clean blankets and a sleeping bag, and put out food for him, and provided a tent.  She couldn’t free her son from addiction, but she could keep him safe from the streets and its desperate people, and fed and sheltered in a way he accepted.

Like the man above, there was a modicum of safety and support and ongoing monitoring if he was ready for help.

–Margaret

 

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Outlook for schizoaffective disorder and schizophrenia

Outlook for schizoaffective disorder and schizophrenia

How Schizoaffective Disorder compares to other disorders

There is little information about schizoaffective disorder in children, which usually starts around puberty.  As a parent, you know how seriously it affects your child, but how does it compare to depression and bipolar (manic and depressive states) and schizophrenia?  What is the course of schizoaffective disorder, and how can you help your child’s future?

Schizoaffective disorder is not as serious as schizophrenia,
but more serious than bipolar/depression.

Research conducted in Britain* studied young people who received typical treatment for schizoaffective disorder, schizophrenia, and bipolar/depression who were between the ages of 17 and 30 (average age was 22).  Over a 10 year period, those with schizoaffective disorder improved slightly, better than those with schizophrenia.

Outlook for schizoaffective disorderBehavioral functioning over time for schizoaffective disorder, schizophrenia and affective disorders (depression, bipolar) at four consecutive follow-ups.  (This scale goes from 2 (good) to 6 (poor). A “1” would be the level of a person with no symptoms and who is considered normal.)
*M. Harrow, L. Grossman, Herbener, E. Davies; The British Journal of PsychiatryNov 2000, 177 (5) 421-426

Behavioral functioning is measured by how well a person does in five areas:Russian brain diagram

  1. Work and social functioning
  2. Adjustment to typical life situations
  3. Capacity for self-care
  4. Appearance of major symptoms
  5. Number of relapses and re-hospitalizations.

Your child will struggle with these, but there’s good news according to a recent landmark study:
Family support improves a patient’s outcome.

Life with a schizoaffective teen,” tells my story, and what steps I discovered which worked to improve my daughter’s functioning and behavior.  This article also provides insights into how children with schizoaffective disorder think.

A new treatment program was developed that altered some well-established practices.  A set of schizophrenia patients received the following support and were later compared with those who had the usual medication approach.

  1. Dosages of antipsychotic medication were kept as low as possible
  2. Help with work or school such as assistance in deciding which classes or opportunities are most appropriate, given a person’s symptoms;
  3. Education for family members to increase their understanding of the disorder;
    (“Efforts to engage and collaborate with family members are often successful during an acute psychotic episode, whether it is the first episode or a relapse, and are strongly recommended.
    Family Involvement Strongly Recommended by the American Psychiatric Association)
  4. One-on-one talk therapy in which the person with the diagnosis learns tools to build social relationships, reduce substance use and help manage the symptoms.”

Patients who went through this for of treatment made greater strides in recovery over the first two years of treatment than patients who got the usual drug-focused care.  More here.
New Approach Advised to Treat Schizophrenia, Benedict Carey, New York Times, Oct. 20, 2015

“..if you look at the people who did the best—those we caught earliest after their first break with reality—their improvement by the end was easily noticeable by friends and family.”

beautifulbrainThe longer psychotic symptoms stay in an extreme phase,” in which patients become afraid and deeply suspicious,” the more likely the person will be vulnerable to recurring psychosis, and the more difficulty they will have coming out of it and adjusting to normal life.

How to help your child

Be very realistic about what your child can handle in school.  They may be extremely intelligent–but maybe can’t handle too much homework; or class disruptions; or lack of empathy from the teacher.  A parent or school counselor should help your child find low-stress classes or activities, and consider limiting the number of classes per day.  They can only hold it together for so long!  I found it helped my schizoaffective child to take later classes, starting at 10 or 11 am.

Get the whole family on board to make his or her life easier.  Your child might be stressful and a source of irritation for everyone, but family members can help reduce this by taking on the chores your troubled child would ordinarily do; avoid pressuring them about something, or anything; and allow your child to say oddball things without confronting them about how irrational they are or arguing with them.

DIY talk therapy – Here are some ways to guide your child out of their troubled states.

Anxiety

  •  psychosisSchizoaffective kids may express anxiety in a tangled web of seemingly unrelated things, and spike them with paranoia about what they mean. Listen carefully, and conduct a gentle interview to explore what truly is bothering them.  It may be as simple as the room being too cold.
  • Give them plenty of time (if you can). A venting session is sometimes all they need.
  • Diplomatically redirect a negative monologue with a comment about something pleasant. This is where it’s useful to hand them a cat or call over a dog, offer tea or juice, or briefly check email.  The point is to break the spell.

Run-on obsessive thoughts

  • Voices and thoughts can be angry, mean, and relentless. Your child may not tell you this is happening, or may simply assume you already know what’s in their head.  Ask him or her if thoughts or voices are pestering them.  If so, show indignation at how wrong it is for them to mistreat your child, “that’s not right that this is happening to you; this is so unfair to you; you deserve better; I want to help if I can…”
  • Encourage your child to ignore the voices/thoughts and they may go away, or encourage them to tell the voices/thoughts to leave them alone. “I refuse to listen to you anymore!  Quit pestering me!  Obsessive thoughts and voices are just bullies.

Help your child stand up to thought/voice bullies the same as
as you would help any child dealing with a bully.  This works.

Life with a schizoaffective teen,” tells my story, and what I discovered that worked to improve my daughter’s functioning and behavior.  It also provides insight into how people with this disorder think.

Take care and have hope.  You can do this.

Margaret

 

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Life with a schizoaffective teen

Life with a schizoaffective teen

I have first-hand experience raising a child with schizoaffective disorder.  Up until my child’s onset of the disorder in the ‘tweens’, I never thought I had much patience or backbone.   But one’s character strengthens with trials, and I learned I was patient and stronger inside than I thought.  Parenting my child entirely changed my life’s direction.

Farther down this post are practical tips and advice for raising your child.

My Story:  Schizoaffective teens have both schizophrenic symptoms (thoughts disconnected from reality) and affective symptoms (unstable emotions and moods).  What an unfair combination of experiences to sabotage one’s brain.   My child had to persevere through intense feelings, excruciating anxiety, and thoughts that rarely touched on facts.  How could anyone maintain any semblance of normalcy during this?   The mental effort of holding oneself together was exhausting.

My child was often exasperated with me, as other teens are with their parents:  “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

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 and voices normal, and became accustomed to them.  Eventually, she noticed that others didn’t see or hear the same things:  the rhinoceros walking by; the sky turning green; words writing themselves on a blackboard.  To my child, here was proof of being special, magical, a traveler on the metaphysical plane.  Because there was proof, she felt superior to others and that she had special powers.

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

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

She awoke one morning with stories of her life as a queen for 1000 years, and talked about it in extraordinary detail.

My child is the bipolar type of schizoaffective person.  While depressive types don’t have the highs or excessive agitation,  they still suffer with anxiety and paranoia.  When she was in a down cycle, she darkened her room and slept in a pile of bed-clothes on the floor.  She avoided things with negative symbolic meaning, such as certain people, certain streets, or certain names.   For some reason, sunflowers and Christmas were upsetting.  During depressive phases, she talked about suicide, or “caught” other disorders such as anorexia and PTSD.  I was often accused of abuse and endured many hurtful words.

Haunted by anxiety and paranoia

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

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

It may not be preventable.  It’s the very nature of schizophrenia spectrum disorders to find something to be paranoid about.  The point is for a parent to learn to avoid triggering the traumatic memories, and avoid reasoning or explaining what really happened.  Our children 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

She did some reading and told me that people with schizoaffective disorder often believe they are connected to a celebrity’s life as lovers or confidantes, and some will stalk that person.  John 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 Beatles 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 she realized, only then, that her ever-present (invisible) boyfriend was a famous rock star.

Partial complex seizures can simulate symptoms of schizoaffective disorder

Partial complex seizures of the left temporal lobe (temporal lobe epilepsy) cause, enhance, or simulate symptoms of schizoaffective disorder.  If your child has not had an EEG, request one.  If there is seizure activity, it can be treated by anticonvulsants such as Tegretol (carbamazepine).  This helped to reduce many of my child’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].  [He] has no power over you.”  She was very upset once because her rock star boyfriend/ghost yelled at her.  I told her to tell him, “Stop it and leave me alone! Don’t talk to me that way!”  She did (somehow), and it worked!  The rock star guy stopped talking to her for a couple of days (as if he was sulking), and returned and was nice to her again.

Things you can do

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

You can ask for, and expect, respectful behavior

It is possible to ask your schizoaffective teen to stop disrespectful or harmful, inappropriate behavior, and it is possible to set a boundary if done in a respectful straightforward manner 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.”  Note that this gave her a reason to wait until I came home.

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

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

 

–Margaret

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Please add a comment about your experiences.  Your observations help others. 

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

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

A Dr. Jackson observed in the late 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.”

Parent to Parent Guidance

Parent to Parent Guidance

Margaret Puckette is a Certified Parent Support Provider, and assists parents on how to effectively raise their troubled child. She believes parents need realistic practical guidance for family life and school, not just information about disorders. Margaret has mentored families for over 20 years. She is an author & speaker, and knows from personal experience there is reason for hope.

You Can Handle This.

You Can Handle This.

You are not alone. It's no one's fault. Behavior disorders are disabilities! Troubled children need a very different parenting approach than 'normal' kids.

Care for yourself first, then set new goals:
1. Physical and emotional safety for all
2. Acceptance of the way things are
3. Family balance, meet the needs of all
4. One step at a time, one day at a time

Practical Guide for Parents

Practical Guide for Parents

A guide with practical steps for reducing stress at home and successfully raising a troubled child. You use the same proven techniques as mental health and other professionals. It starts by taking care of your wellbeing first, then taking an entirely different approach to parenting.
Amazon $14.99, Kindle $5.99