Category: schizoaffective disorder

What will happen in your troubled child’s future?

What will happen 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 future adulthood look like?

This chart depicts a spectrum of outcomes of mentally ill children when they become adults.  No matter how ill your child is, if he or she gets support and treatment early, their future adult life could end up in the NORMAL column, and out of the RED column.  A network of family, friends, and professional staff can keep them from the worst-case scenario in the far right column, and move them in the direction of normalcy.

“Wellbeing” is possibly the most important.

This is a checklist of childhood problems that lead to poor future 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.
Age 16, starting mental health treatment

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 about their future, 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.

Age 20, after consistent mental health treatment

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.  Their child still had hope.

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 in the previous story, her son had a modicum of safety and support, and ongoing monitoring if he was ready for help.

 

–Margaret

Please share your story.

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 else more positive. 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!”   “Back off and leave me alone, you jerk!”  Negative 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.  Seriously, 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

What to know about psychiatric residential treatment

What to know about psychiatric residential treatment

residential centerHave you been searching for psychiatric residential treatment for your child?  Do all the programs sound wonderful?  Ads include quotes from happy parents, and lovely photos and fabulous-sounding activities.  But what’s behind the ads?  Residential treatment programs are diverse, but there are important elements they should all have.  Here’s how to avoid low quality residential treatment.

Psychiatric residential treatment is serious stuff–it’s difficult to do–especially when troubled children and teens are put together in one facility.

Should you ask other parents for their opinion of a program?  In my experience with a child in psychiatric residential care, and as a former employee of one, word-of-mouth is not a reliable way to assess quality or success rate.  There are too many variables: children’s disorders are different; acuity is different; parents’ attitudes and expectations are different; length of time in the facility is different; what happens once a child returns home is different…  It’s most helpful to ask questions of intake staff and doctors or psychologists on staff.  Quality psychiatric residential care facilities have important things in common.

What to ask about the staff:

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  • What is the training and licensure of staff?  Are there therapists with MSW degrees, registered nurses, psychiatrists and psychiatric nurse practitioners, and is a medical professional available on site 24/7?
  • There should be a high staff to patient ratio, and a physically comfortable environment with lots of emotional support.
  • Do the staff seem mature to you?  Do they support each other, are they a team? There is often heavy staff turnover at residential treatment centers because the work is emotionally draining, so staff cohesion is as important as the qualities of each individual.
  • Safety is paramount.  What are the safety and security plans in the facility?  Staff must be able to safely manage anything that can go wrong with troubled kids.  They should be trained in NCI (Nonviolent Crisis Intervention), “training that focuses on prevention and offers proven strategies for safely defusing anxious, hostile, or violent behavior at the earliest possible stage.”

What to ask about programs:

  • Does the program specifically identify parent/family involvement as part of treatment?  Does it emphasize parent partnership with staff?  Ask.  Whether you live close or far from the center, even out-of-state, you should be regularly included in conversations with staff about your child’s treatment.  You should also be included in a therapy session with your child periodically; some facilities can connect with you over Skype.  Your child’s success in psychiatric care depends on their family’s direct involvement.
  • The program should coach you in specific parenting approaches that work for child’s behavioral needs.  While your child is learning new things and working on their own changes, you must know what to establish back home when they return.
  • You should be informed why your child is getting the treatment or behavioral modifications he/she is receiving.
  • Last and most important: when your child leaves, there should be a discharge meeting and a discharge plan.  What this means:  all staff who worked with your child get together with you and discuss what treatment should continue once they go home.  Medication management and therapy is identified in advance, appropriate school accommodations are discussed, changes in the home environment are discussed if needed…  You should never leave without knowing what comes next in the months following care.

Body health is brain health, and vice versa.

  • residential programsMental health treatment will include medication and therapy, but must also include positive activities and an educational program.  The whole body needs care:  exercise, social activities, therapeutic activities (art, music, gardening), healthy food, restful sleep, etc.

Is your child emotionally safe as well as physically safe?

  • You should be able to visit the unit or cottage where your child will live, see their bedroom, and see how the other children interact with staff and how staff interact with each other.

What to ask about the business itself:

  • Can you take a tour ahead of time?  Can your child or teen visit too if appropriate?
  • Are emergency services nearby (hospital, law enforcement) that can arrive quickly?
  • Does the facility have a business license in their state?  Do they have grievance procedures?  Is the center accredited as a treatment facility, and by whom?  In the U.S., the main accreditation authority for healthcare facilities is The Joint Commission.

Psychiatric residential treatment works miracles, but it doesn’t work for all children.  Some need to go into treatment more than once to benefit. Some fall apart a few weeks or months after discharge.  These are common.  What’s important is that staff observations and advice help you and your child with insight and skills for managing his or her unique symptoms, and for communicating effectively.

Good luck.

 

What was your experience when your child was in residential care?  Please share your comment so others can learn.

Faith can help, and harm, a family’s mental health

Faith can help, and harm, a family’s mental health

When faith helps

Most of the time, people can heal and find peace and self-acceptance through faith. All the world’s great faiths, those that have lasted centuries, are kept alive for this reason. All have common themes of healing and service to others. When things go poorly, meditation and prayer, with others or in private, lead to connection and wholeness. Faith reveals that things are better, and will be better, than they seem.

When families are in crisis because of their troubled child, parents tell me they depend on faith, even parents who don’t profess a faith practice. They say it’s their only source of strength. Most families with a child who is sick, disabled, or mentally ill will go through dark times, when a parent’s world is simply too overwhelming. Most often, no answers are forthcoming, nor any rescue. The only choice is to hand over their burden to a “higher power,” God, the Buddha, Allah, the Great Spirit… This act of “handing over” is a foundation of healing in Alcoholics Anonymous, Narcotics Anonymous, and dialectical behavioral therapy (DBT).

Few things help a family more than a supportive community of believers.  There will be one person who listens to a frightened parent on the phone, and another person who takes a traumatized sibling on an outing, and another person who provides hugs and cookies. If a mentally ill child continues to decline, a good faith-based support network will stay on. The child may not thrive, but the family does, and has the strength and forbearance to handle the years’ long task of supporting their mentally ill loved one.

Science shows that faith results in better lifetime outcomes for a child

This writer typically trusts science, but in the depths of my family’s despair, only faith and the prayers of others kept me from falling apart.

There are scientists among the faithful who have asked the question: does faith really help the mentally ill? In another blog post, Spirituality and mental health, some research are summaries of research going back 36 years.  (Follow this link for the research citations.)  The answer?  Yes, faith makes a real and measurable difference in improving mental health.

More recent scientific research shows clear evidence from brain scans that meditation and prayer change brain electrical activity, from anxious or agitated to serene and grounded.  The person actually feels and behaves better.  This article has more information on this, Yoga – Safe and effective for depression and anxiety.

Like prayer, “talk therapy” or psychotherapy also shows improvement on brain scans. Imagine, just talking with someone improves the physical brain. According to the article appended below, “When God Is Part of Therapy,” many prefer therapists who respect and encourage their faith. It just makes sense.

When faith harms

This section is a personal appeal to faith communities who have unconscionably failed families and their children with mental disorders.

Faith communities depend on people, and people have biases and foibles.  Many of ‘the faithful’ hold negative beliefs about others, right or wrong.  Children who suffer, and their families, are identified as possessed, of evil character, disbelievers, victims of abuse, or cruelest:  those who are paying for their sins. Families are repeatedly told these very things today.

“Sometimes, people hide from the Bible. That is, they use the Christian holy book as an authority and excuse for biases that have nothing to do with God.”
–Leonard Pitts Jr., Miami Herald

Stigmatization from a faith community is a cruel betrayal.

A child’s inappropriate behavior is not a choice, it is a verifiable medical illness, one with a higher mortality rate than cancer:  Mental illness more deadly than cancer for teens, young adults.  Families with sick children need support; our sense of loss is devastating.

Testimonials

Mother with five children, one with bipolar disorder:

“We were members of our church since we were first married, all our daughters grew up here, but when my youngest spiraled down, I was told the sins of the father are visited on the sons. Or we weren’t praying enough. I knew they thought (Dad) had done something bad to her. We left and went church shopping until we found a pastor who understood and supported us.”

Mother of two children, one with acute pervasive development disorder:

“I wish we had a “special needs” church. We’re so afraid our kid is going to say something and we’re not going to be accepted. We haven’t gone to church for years because of this. They just turned their backs on us, it happened to another family with a deaf child. They avoid parents in pain. Deep down in my heart I believe in the Lord, but there are days when I wonder “where is God?” People call out to pray for a job, or a kid’s grades, but we wouldn’t dare ask for us, no one would get it, we’d be told we were bad parents or didn’t punish him enough.”

Mother of two children, one with schizoaffective disorder:

“When I went up to the front to light a candle and ask for a prayer for my daughter, I expected people would come up afterward and give a hug or something, just like with other families with cancer and such. But it didn’t happen. No one even looked at me. I left alone and decided never to go back.”

Some good news

FaithNet

The National Alliance on Mental Illness (NAMI) has recognized the need for the mentally ill to be part of faith communities, and the negative experiences most face when they attempt to participate in a religious community. NAMI started FaithNet to encourage and equip NAMI members to engage with and share their story and NAMI resources with local faith groups, and appeal for their acceptance.

Key Ministry

Key Ministry: Welcoming Youth and Their Families at Church
Stephen Grcevich, M.D., president, Key Ministry and child & adolescent psychiatry in private practice, Chagrin Falls, Ohio

“Key Ministry believes it is not okay for youth living with mental illness and their families to face barriers to participation in worship services, educational programming and service opportunities available through local churches.”

Churches in American culture lack understanding of the causes and the needs of families impacted by mental illness, which poses a significant barrier to full inclusion.

“A study published recently by investigators at Baylor University examined the relationship between mental illness and family stressors, strengths and faith practices among nearly 5,900 adults in 24 churches representing four Protestant denominations. The presence of mental illness in a family member has a significant negative impact on both church attendance and the frequency of engagement in spiritual practices.” When asked what help the church could offer these families, they ranked “support for mental illness” 2nd out of 47 possibilities. Among unaffected families, support for mental illness ranked 42nd.

________________________________________

When God Is Part of Therapy
Tara Parker Pope, March 2011, New York Times

Faith-based therapy is growing in popularity, reports Psychology Today, as more patients look for counselors who can discuss their problems and goals from a religious frame of reference.

Studies show that people prefer counselors who share their religious beliefs and support, rather than challenge, their faith. Religious people often complain that secular therapists see their faith as a problem or a symptom, rather than as a conviction to be respected and incorporated into the therapeutic dialogue, a concern that is especially pronounced among the elderly and twenty-somethings. According to a nationwide survey by the American Association of Pastoral Counselors (AAPC), 83 percent of Americans believe their spiritual faith and religious beliefs are closely tied to their state of mental and emotional health. Three-fourths say it’s important for them to see a professional counselor who integrates their values and beliefs into the counseling process.

The problem for many patients in therapy is that many patients are far more religious than their therapists.

Nearly three-fourths of Americans say their whole approach to life is based on religion. But only 32 percent of psychiatrists, 33 percent of clinical psychologists and 46 percent of clinical social workers feel the same. The majority of traditional counselor training programs have no courses dealing with spiritual matters.

When children are hospitalized with other ailments, the family draws sympathy and support from others.  But because of mental health stigma, most families like ours don’t when our child is hospitalized.  If not blame, we are second-guessed, or as bad, met with silence or a change of subject.

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 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 herself together must have been exhausting.

My child was often exasperated with me, as other teens can be with their parents:  “Mom, you don’t understand; it’s like the TV’s on, the radio’s on, music is streaming, 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.  I sounded like she was processing 10,000 inputs at once.  The mental overload must be why she acted crazy sometimes.

Hallucinations feel real when you’re in them

My child had a slow early onset of hallucinatory experiences beginning about 11 or 12, and she 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.  She took this proof of being special, magical, a traveler on the metaphysical plane.  She had attitude and felt superior to others; she felt 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 said this only occurred in math class, and complained it was impossible to hear what the teacher said.  Even today, during summers when she is happy, she seems to be hearing jokes throughout the day.  Our family witnesses outbursts of laughter and giggling for no apparent reason. Humor is contagious, and we all cheer up when this happens.

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 and described her life as a powerful queen for 1000 years, and talked about it in extraordinary detail.  She had an uncanny air of confidence and royal privilege in the telling.


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 were 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 her mental health.)  I have apologized 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.  Major obsessions 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.”

Paranoia is ever-present.  It’s the very nature of schizophrenia spectrum disorders to find something to be paranoid about.  The point is that a parent to must avoid talking them out of their paranoia.  It will never work, and both of you become frustrated and upset with each other.  The emotional drain on your child can also cause intense irritability.  I had to learn to “de-escalate” my child, don a quiet and patient demeanor, affirm her feelings, show empathy, and change the subject (“redirect”).  The other problem with paranoia is that it creates intense resistance to psychiatric treatment–as if others are trying to control their mind.  There’s more about building trust below, the kind of trust you’ll need to help them accept mental health treatment.

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 Hinckley 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, her boyfriend attempts to assassinate a president to impress her.  Hinckley then did the same, and attempted to assassinate then-President Ronald Reagan.  In prison, Hinckley 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, or dangerous, such a wanting to stalk or harm someone because they your child is obsessed with them.

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 in the left temporal lobe.  The medication removed some of her symptoms, such as seeing auras around people and moving patterns on 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 appropriate and 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—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 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 seemed to me like a boyfriend who gave her support and made jokes to make her laugh.  (I think many 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 her ‘boyfriend’ 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 apparently worked.  The voice vanished for a couple of days (as if he was sulking?), but returned and apologized later.

Things you can do

  • Low stress is a priority. Create a low-key environment in the home, and limit stressful sensory input (people bickering, harsh music, intensely emotional movies or reading).
  • 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  you don’t experience.  You need their trust so they will listen to you and accept support that can protect them from their own mind.
  • 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 loud music through headphones, fine.  Just watch.  It will be obvious if it settles them, or helps them focus and become clear-headed.
  • 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.
  • Provide your child with a journal or large surface upon which to write or draw.  This has several benefits.  Writing and drawing help them process and organize their thoughts.  It also helps you understand their head space, and if their thoughts reflect normal adolescents or are veering off into paranoia or potentially 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, and it is possible to set a boundary if done in a respectful considerate tone of voice 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 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

Please add your own story or comment.  Your observations help others.  Read about other parents’ experiences, which may help you better understand your situation.

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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).

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Social Interaction Increases Survival by 50%

Psychiatric Times. July 30, 2010

Theoretical models have suggested that social relationships influence health through stress reduction and by more direct protective effects that promote healthy behavior. A recent study confirms this concept.  Findings from a meta-analysis published in PLoS Medicine indicate that social interaction is a key to living longer. Julianne Holt-Lunstadt, PhD of Brigham Young University and colleagues analyzed data from 148 published studies (1979 through 2006) that comprised more than 300,000 individuals who had been followed for an average of 7.5 years. Not all the interactions in the reports were positive, yet the researchers found that the benefits of social contact are comparable to quitting smoking, and exceed those of losing weight or increasing physical activity.

Results of studies that showed increased rates of mortality in infants in custodial care who lacked human contact were the impetus for changes in social and medical practice and policy. Once the changes were in place, there was a significant decrease in mortality rates. Holt-Lundstadt and colleagues conclude that similar benefits would be seen in the health outcomes of adults: “Social relationship-based interventions represent a major opportunity to enhance not only the quality of life but also of survival.”


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