Category Archives: mental illness

Life at home is a war zone

Life at home is a war zone
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Homes with troubled children are war zones–very different from those with physically-disabled kids.   We can’t make things better for our child with wheelchairs or ramps or other specialized equipment.  We need serious fire power.  This story tells what it’s like to live with our child, seek mental health treatment, and find social and emotional support for ourselves.  It is inspired by, and much quoted from, Emily Perl Kingsley’s “Welcome to Holland,” about having with a son with cerebral palsy.  The original is at the end of this article.

Welcome to the War Zone

I try hard, often unsuccessfully, to describe the experience of raising a child with a brain disorder – to try to help people who have not shared that difficult experience to understand it, to imagine how it would feel.  It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make your wonderful plans.  The Coliseum, the Michelangelo David, the gondolas in Venice.  You may learn some handy phrases in Italian.  It’s all very exciting.  After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.

Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Afghanistan.”  “Afghanistan?!?” you say.  “What do you mean Afghanistan??  I signed up for Italy!  I’m supposed to be in Italy.  All my life I’ve dreamed of going to Italy.”  But there’s been a change in the flight plan.  They’ve landed in Afghanistan and there you must stay.

They’ve taken you to a dangerous unstable place full of fear.  You have no way to leave, so you ask for help, and citizens offer to help but you must pay in cash.  Instead of help, they lead you down one blind alley after another.  You are afraid because you are different, you are a target because you stand out.  After spending most of your cash, you can’t ignore it any more–you are in very serious trouble–completely alone in a strange country, surrounded by people who don’t like you.  You won’t be rescued.  You can only think about hiding and praying and holding yourself together.

After a few years of ‘round-the-clock stress and isolation, you make a couple of connections, and arrange an escape across the border.  There are dangers in the next country, but your connections help.  Your escape seems to take forever, yet you finally make it home!  But everyone you know has been busy coming and going to Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever,  go away… because the loss of that dream is a very, very significant loss.  But… if you spend your life mourning the fact that you didn’t get to Italy, you may never feel the fulfillment of using your character-building experience to help others escape Afghanistan.

Margaret

– – – – –

“Welcome to Holland” by Emily Perl Kingsley – http://ourlifeinholland.blogspot.com

“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this….When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”

The Holland story has been used widely by organizations such as NAMI (National Alliance of Mental Illness), as a way to help parents with troubled kids accept their situation when their child is identified as having a brain disorder.  Holland just seems too nice, too peaceful, to relate to our situations.

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Naturopathic and holistic mental health treatment

Naturopathic and holistic mental health treatment
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This guest article is by a naturopathic physician in Portland, Oregon USA, who specializes in mental health treatment for children and adults.  Following is a summary and link of a podcast about the use of holistic/alternative medicine for the treatment of ADHD.

Addressing Mental Health Issues From a Holistic Perspective
Krista Tricarico, ND.  www.openmindmedicine.com

Holistic treatment

The health of the mind and body are intricately linked. Just as our thoughts strongly influence our physical health, our individual physiology affects our mental and emotional well-being. The foods we eat, our digestive health, the toxins in our environments, our hormones, lifestyles, experiences, beliefs and attitudes all play important roles in our physiology and biochemical make-up. As a philosophy, holistic mental health recognizes this beautiful web of interdependency.

Holistic approaches for adults and children can be used in conjunction with psychiatric medication, but unlike pharmaceuticals, holistic mental health treatments usually have the “side effect” of improved physical health and a richer emotional experience. Rather than suppressing or covering up symptoms with a drug, the goal of treatment is to address underlying causes and work towards integration and balance.

As a naturopathic physician, my goal is to support the wisdom of the body and mind and facilitate an individual’s inherent ability to heal. Naturopathic Doctors (ND’s) are licensed primary care physicians who have attended a four-year, postgraduate-level naturopathic medical school and are clinically trained in the art and science of natural therapies. In addition to conventional diagnosis, laboratory testing and pharmaceutical medications, the scope of naturopathic medicine includes nutrition, counseling, homeopathy, botanical medicine, physical therapies, and mind-body approaches. Naturopathic training does encompass the same basic bio-medical sciences as conventional medical training, but the approach to health and disease differs considerably. It is the philosophy of naturopathy that clearly differentiates this medicine and directs how we approach each patient.

Treatments

This will look different for each person and will be guided by conversation and individual interests as well as physical exam and laboratory analysis when appropriate. I have found the following therapies to be key factors in mental health recovery.

Counseling

Some patients see me primarily for counseling, and people with this focus are welcomed. Others are either interested in a blend of counseling and naturopathic approaches or seek care strictly for holistic medical support. A young person’s treatment needs and interests also change over time, so I meet a patient where they are at this moment. My counseling approach has a strong emphasis on self-awareness and mindfulness. Self-observation coupled with an attitude of curiosity, openness and acceptance allows for conscious insight and more freedom in the responses to the stresses and challenges a young person faces daily. Mindfulness-based therapies are a particularly effective approach for depression, anxiety and addiction issues, and can lead to increased clarity and a sense of contentment.

Nutritional Therapies

The foods we eat have a direct impact on the chemistry of our bodies and brains and, therefore, on our mood, thoughts and behavior. Our brains require the correct balance of amino acids, fats, vitamins, minerals and glucose in order to function properly, and individual needs can vary drastically. I work with all patients, children and adults, to uncover their unique nutritional needs through history-taking, diet analysis and lab testing, and then help individuals address underlying biochemical imbalances through shifts in their diet and nutritional supplements. Food allergies or sensitivities can play a significant role in mental health, as well, and the removal of these foods from the diet can have a profound impact on one’s healing. Orthomolecular psychiatry is a field of medicine that has applied these nutrition-based therapies in the treatment of conditions such as schizophrenia, bipolar disorder, anxiety and depression and has helped shape my naturopathic practice.

For more information about orthomolecular medicine, visit www.orthomolecular.org.
For more information about food allergy testing, visit www.usbiotek.com.

Homeopathy

Homeopathy is a gentle yet powerful system of healing based on the principle of “like cures like.” People have observed since ancient times that a substance that causes an illness or symptom can, in very small doses, cure the same problem by stimulating the body’s intrinsic healing ability. Through an in-depth interview, I strive to understand a child’s unique physical, mental and emotional experiences and, after careful study, select the appropriate remedy. Homeopathy offers a safe and elegant treatment that is a natural complement to counseling and can be used alongside conventional medications and other naturopathic treatments. As a truly holistic and individualized form of medicine, it is particularly well-suited to psychological and psychiatric concerns. Although identifying the effective remedy can sometimes require patience and perseverance, the results of successful homeopathic treatment are profound and long-lasting.

Restoring Digestive Health

Many mental and emotional concerns have their origins in the gut. It is important to identify and treat conditions such as hypochlorhydria (low stomach acid), candida overgrowth, gut dysbiosis (a bacterial imbalance in our digestive tracts), parasites, inflammation, leaky gut (increased permeability of the intestinal wall), and food allergies as they have direct effects on brain function. Imbalances in the gut play a significant role in many neuropsychological conditions. Conversely, our emotions strongly influence our appetite and digestion. The nervous system and the digestive system are intricately linked by a constant exchange of chemical and electrical messages including nutrients and neurotransmitters. Anything that affects one realm is likely to affect the other, and I have found that addressing gastrointestinal health is often foundational in one’s mental health recovery.

Blood Sugar Balancing

The sugar in our blood is called glucose, and this is the primary fuel for our bodies. Being one of the most sensitive and demanding organs, our brains require a constant supply of this glucose to perform its never-ending functions. A healthy body is able to regulate the blood sugar to provide a consistent energy source for the brain; unfortunately, this function is commonly impaired. Hypoglycemia is a condition in which the body can’t sustain constant glucose levels and can be a causative factor in attention and behavior issues, anxiety, panic attacks, rapid-cycling bipolar disorder, insomnia and addiction. Elevated blood sugar over time not only leads to diabetes, heart disease and obesity but also mood and behavior disturbances, decreased mental functioning and dementia. Many psychiatric medications put people at additional risk for blood sugar problems only exacerbating this problem. Balancing your blood sugar is an important component of disease prevention and general health and will also support your mood, energy, metabolism and mental functioning.

Amino Acid Therapy

Supplementation with amino acids can help optimize neurotransmitter levels. Amino acids are the building blocks of proteins that our bodies transform into neurotransmitters such as serotonin, melatonin, GABA, dopamine, epinephrine and norepinephrine. These are the messenger molecules that allow our nerve cells to communicate and have a direct impact on our mood, learning, attention, pain and pleasure perception, sleep, energy, and thought processes. Most psychiatric drugs manipulate our body’s ability to process these neurotransmitters in an attempt to alter the levels of these important chemicals. Instead of, or in conjunction with, antidepressants or anti-anxiety medications, we can give the body the amino acids it needs to make more neurotransmitters and avoid the negative side effects of the drugs. Neurotransmitter testing is available and can help guide the treatments. Targeted amino acid therapy is a powerful tool for addressing a wide variety of mental health concerns and provides a safe and effective alternative to these medications.

For more information on amino acid therapy, visit www.neuroassist.com.

Balancing Hormones

Our hormones are produced and controlled by our endocrine glands and include chemical messengers such as thyroid hormone, cortisol from the adrenals, insulin from the pancreas, and estrogen, progesterone and testosterone from the reproductive organs. As parents of adolescents who are entering puberty know, hormonal change has a profound effect on behavior. Imbalances or disturbances in any of these interconnected systems can alter the way our brain functions. For example, thyroid dysfunction is an often-overlooked, underlying cause of depression, anxiety, poor memory and fatigue, and PMS is a well-recognized cause of mood swings, depression, anxiety and sleep disturbances. Helping the body regain its delicate hormonal balance can have far-reaching effects for the mind.

Detoxification / Heavy Metal Chelation

We are exposed to an extraordinary amount of toxins through our food supply, the air we breath, and even our tap water. Toxic exposures affect the health of our brains. When the body encounters more toxins than it can effectively process, it stores these chemicals in fat cells, and our brains are largely made up of fat. Some people are good detoxifiers. Others with autism, ADHD, Alzheimer’s, Parkinson’s, depression, chronic fatigue, schizophrenia and bipolar disorder are often not. Supporting detoxification and the safe elimination of toxins can be a key component to mental health recovery. I assist patients with appropriate detoxification strategies whether that is a gentle cleanse, a more intensive detox protocol or heavy metal chelation.

Mind / Body Treatments 

Mind/body treatments engage the power of your mind in your own process of healing. I use therapies such as breath work, meditation, memory reintegration, relaxation strategies, and Emotional Freedom Technique (www.emofree.com) to help patients move towards a state of awareness and peace. Reflecting on and connecting with one’s own spirituality can also be an effective stress-management tool. Learning to consciously calm the mind and relax the body has a powerful effect on our neurotransmitters, hormones and immune system, and ultimately our health and sense of well-being.

Dr. Krista, www.openmindmedicine.com


Foods that support brain and mental health

  • Avocado
  • Walnuts, almonds, other nuts and seeds
  • Salmon, tuna, sardines, mackerel, herring, trout
  • Ground flax seed
  • Brightly colored fruits and vegetables – eat the rainbow
  • 70% cacao and higher dark chocolate
  • Green tea (stone ground from whole tea leaves)
  • Berries:  acai, blueberry, cranberry, blackberry

Herbs and other alternatives that support brain and mental health 

  • Fish, cod liver or krill oil (if you could only have one thing, this would be it)
  • L-theanine or kava kava for calming and reducing anxiety
  • Turmeric, curry and other antioxidants
  • B-complex vitamins
  • Magnesium
  • Light therapy, for improved mood and energy

Substances that are bad for brain health

  • Alcohol
  • Artificial food coloring
  • Artificial sweeteners
  • Sugars: cane sugar, soft drinks, corn syrup
  • Hydrogenated/partially hydrogenated fats and trans fats (fried foods). Saturated fats are fine, it’s the hydrogenated and trans fats that are bad.  I actually highly recommend organic coconut oil
  • Nicotine, Marijuana, all other controlled substances

How do you like this article?  Please rate it at the top, thanks.

Integrative Management of ADHD – What the Evidence Suggests
By Richard Balon, MD | January 6, 2011

The use of complementary and alternative medicine treatments by children and adults with ADHD is the rule rather than the exception…more than half of parents who have children with ADHD treat their child’s symptoms with vitamins, dietary changes, and expressive therapies—but only a small minority tell their doctor. And roughly 8 out of 10 patients who use these treatments regard them as their primary therapy.

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On child psychiatry and stigma

On child psychiatry and stigma
2 votes

When parents complain about psychiatrists, it’s often because the psychiatrist treats them as being the cause for child’s problems.  Doctors often do not understand what life is like in the family’s home, and how impossible it is to follow through on their recommendations.  Interestingly, psychiatrists who themselves have a troubled child are keenly aware of the challenges.  In fact, they too can go crazy with grief, and guilt, and a sense of failure… just like parents who aren’t medical doctors.  A doctor’s negative attitude towards parents has huge emotional consequences for them.  If parents aren’t listened to, or if they are talked down to, it adds a load to their emotional baggage and is debilitating.  It weakens their capacity for caring for their incredibly stressful child, and for themselves.  To be fair, the medical field has lots of practitioners who aren’t helpful or people-friendly.  What’s different about psychiatry is that The Rest Of The World stigmatizes anything related to mental health or brain health… it’s as if brains are always healthy, and if someone has a behavior problem it’s their fault.  Many also think mental health treatment itself is sinister and evil, and that psychiatrists and psychologists themselves are provide fake or harmful treatments to unsuspecting people.

Our Own Worst Enemies
Nada Logan Stotland, MD, MPH

“Oncology manages to cloak the most primitive possible treatments—poison and burning—with elaborate protocols. Yet the mention of psychiatry conjures ECT, and ECT conjures images of the snake pit.  …We are the only specialty with our own dedicated hate group. We shouldn’t be our own worst enemies.”  May 18, 2010, Blog @ www.psychiatrictimes.com

o        Dr. Stotland, above, mentions ECT  (electroconvulsive therapy), or “shock therapy.”  It reboots the brain and is the only thing that keeps some people alive and eases their suffering.  So how is ECT worse than shocking a stopped heart with a defibrillator–two paddles on the chest and BOOM!  Which is more barbaric?

o        In the TV medical dramas, there’s this common scene:  a patient is in a hospital bed surrounded by doctors, and the patient is bleeding, or screaming in pain, or convulsing.  Somehow this is acceptable in prime time.  What if the scene was different.  Instead, an agitated, hallucinating patient is being restrained, and injected with a drug that immediately calms and relaxes them.  My guess is the public would find it sickening and unethical.

o        When a sweet-looking child loses all of his or her hair after being poisoned by chemotherapy, it evokes sympathy and compassion.  But if this same  child’s hair was lost while taking a psychiatric medication, then it would be seen as a barbaric side-effect of forcing drugs on children to send them to zombie-land.  Cancer treatment is forgivable; treatment for brain diseases is not.

This public attitude must change.   It victimizes the victims who live with mental disorders, and the confrontations and insinuations families experience is emotionally debilitating.   Mental health treatments are no more barbaric than those of other medical illnesses, but the stigma unique to mental health manifests itself in blame, prejudice, and the cruel insensitive comments of others.  Let the public dialogue discuss improving lives instead of finding fault with doctors, sufferers, and their families.

–Margaret

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Use IQ sub-scores to guide your child’s future

Use IQ sub-scores to guide your child’s future
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The IQ of a child or teen does not predict their success or failure in the world, nor their chances for a meaningful life that’s full of well being.  But in very practical terms, your child will need to function as an adult someday, and take care of themselves, which means getting a job and getting a life.  What’s the best job or future path?  What isn’t?  If you know how your child scored on different parts of the battery of IQ tests, you can guide them to a future that rests on their best scores, and this is especially important for young people with behavioral disorders.  Let me explain.

A person’s IQ is the average of the scores from tests for different types of intelligences, and each test can be scored from a range of 0 to ~200.  From the Wechsler IQ Scale, used most widely in schools, there are six intelligence types. (There are many different IQ tests in use today, besides the Wechsler Scale.)

  • Verbal comprehension  Ex:  Measures the ability to write, work crossword puzzles, use words creatively or convincingly, tell interesting stories or funny jokes, debate an issue, explain things clearly, and use a large vocabulary.
  • Perceptual Reasoning  Ex:  Measures the ability to put puzzles together, appreciate of art or photography, use geometry, learn best with charts and pictures, draw, notice details.
  • Working Memory  Ex:  Measures the ability to remember strings of numbers or letters, lists, and subjects just observed or subjects recalled from a much earlier time.
  • Processing Speed   Ex:  Memory recall, speed of problem solving, recognition, and correlation.
  • Reading   Ex:  Measures the ability to read and understand different types of writing, to learn and draw conclusions from reading, reading speed, comprehend the meaning in written material.
  • Math Reasoning  Ex:  Ability to solve mysteries, solve logic and math problems, organize things, figure out how things work, use technology, appreciate and apply science.

Your child’s individual intelligence scores are better indications of your child’s strengths and weaknesses.  You should support interests that take advantage of where their best intelligence is, their high scores, to prepare them for schooling or a job.  On the other hand, if you know where they score low, you can arrange extra support for them before they become adults–or you can guide them away from a future choice (such as a career) where they won’t or can’t thrive.

The philosophy here is to help your troubled child use the best of what they have, and not require them to be well-rounded.  Pressuring them to do well in everything isn’t helpful for two reasons: 1. troubled children commonly have a wider range of low to high scores, and they aren’t or can’t be well-rounded; 2. your effort goes into weaknesses they struggle with, instead of  strengths that need nurturing and celebrating.  For troubled kids especially, self-esteem is critical.

A hypothetical case –  Take two very different children with very different IQ scores, yet both with the same behavioral problems in school.  They act out, pick fights, hit others and damage others’ things.  Sean is a 15-year-old boy with an IQ of 83, diagnosed with ADHD and Fetal Alcohol Effect (FAE); Katy is a 10 year girl with an IQ of 122, diagnosed with PTSD and ODD.  In the graph below, Sean’s scores are in red, and Katy’s are in blue.

 Sean’s score of 83 is misleading because his overall functioning is much lower.  In fact, three of his test scores are below 75, the level designated as developmentally disabled.  His special education teachers are surprised he does so poorly in school because he seems so normal on the surface thanks to his above average verbal skills.  He has lots of friends.  He communicates clearly, he listens to others, and he likes to tell good stories. What should Sean be when he grows up?

Half of Katy’s scores are above gifted, ~130, but her below average verbal ability prevents her from mastering essential social and communication skills.  Because she’s so intelligent, people are surprised that she continues poor behavior even though she is punished for it.  But Katy’s behavior comes from an early trauma.  And with lower verbal skills, she has a harder time communicating her needs, and experiencing the many little interactions that help us mature.  Katy can do anything, but what shouldn’t Katy do when she grows up?

To help people understand the implications of IQ, psychologist Dr. Arthur Jensen created a chart that he believed matched IQ scores to careers:

  • 89-100 would be employable as store clerks
  • 111-120 have the ability to become policemen and teachers
  • 121-125 should have the ability to excel as professors and managers
  • 125 and higher demonstrate skills necessary for eminent professors, executives, editors

“What is an IQ?” http://homeworktips.about.com/od/homeworkhelp/a/IQ.htm

From this chart, Sean’s IQ of 83 is too low for a store clerk, and yet Sean is able to function pleasantly and helpfully around people in structured situations.  He might do fine helping customers in the right kind of store.  He’s also good at tackling one day projects with groups of people.  Maybe landscaping or neighborhood clean-up is is meaningful to him and he thrives.

Katy could easily become the professor or executive in Dr. Jensen’s chart, yet her verbal skills might limit her to careers that don’t require nuanced interactions with people.  She might do best working semi-independently, possibly in technology, science, or engineering.  She might love a summer science camp where her intelligence would get the challenges it needs and shine.

What will your child do when he or she grows up?  You can’t make their decisions, but you can influence their choices.   Introduce them to situations they are predisposed to master.

“No IQ score should be considered an exact measure of intellectual ability…  It does not measure creativity, leadership, initiative, curiosity, commitment, artistic skill, musical talent, social skills, emotional well-being, or physical prowess – all components which can be included in definitions of giftedness.”
National Association of Gifted Children http://www.nagc.org/index 

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

— Margaret

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Life with a schizoaffective teen

Life with a schizoaffective teen
64 votes

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).

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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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