Category: mental illness

Your rights as the parent of a teen with a mental disorder

Your rights as the parent of a teen with a mental disorder

Parents have more rights than they think.

In a previous blog article on the subject of parents rights, I described how parents can be shocked to learn that their troubled teenager has the right to refuse treatment, Balancing teen rights with parent rights when the teen has a mental disorder.

What if your teen refuses treatment?  They get worse. Over months and years, if your child experiences serious symptoms of the disorder, such as schizophrenia, depression, or bipolar disorder, their brain loses cognitive function just as in Alzheimer’s disease.  Breaks in treatment means loss of brain function, and they become more vulnerable to multiple hospitalizations.  A troubled teenager can refuse treatment for any reason, and explaining the mental health risks to a person clouded by anxiety, depression, mania, or paranoia goes nowhere.

If a teenager had any other illness besides a behavioral disorder, refusing or withholding treatment would be considered child abuse and grounds for removing the child from the home.

Laws in many countries err on the side of protecting a person’s civil rights, but a teenager is not ready to take the responsibility that goes with these rights.(An excellent website on pertaining to Special Education Law is Wrightslaw. Click on “Topics from A to Z.”)

What if you’re teen becomes involved in crime?

  • For safety and health reasons, you have the right to search your teen’s room and remove or lock-up risky items like drugs, weapons, razors, pornography, or anything negatively affecting health. Be careful: this can destroy trust if done inappropriately. Inform your teen only if you find and remove unsafe items but otherwise leave everything else alone!
  • You can set any curfew time you think appropriate, and you do not have to adhere to curfew times used by law enforcement. Suggestion: compare with other parents’ curfews. Your teen will more likely follow rules that his or her peers follow.
  • You can monitor everything in your home, and on your computer and phone. You can limit cell phone services, and get GPS tracking on the phone and in the car. Prevention is more effective if your teen is informed about this, and it prevents others from taking advantage of your child, too.
  • You can report your concerns to anyone: teachers, other parents, and the local police precinct.
  • You can search for your child by calling other parents or businesses, or visiting their friends’ homes, or searching public places where your child might be.
  • You can and should call the police if your child runs away, or if your child is being harbored by someone who wants to ‘protect’ them. It is illegal to harbor runaways and those who do are subject to criminal charges.
  • You can and should notify anyone who encourages your teen to run away or who takes your teen with them without your permission, that this is custodial interference and subject to criminal charges.

What if your child’s mental health provider doesn’t share information you should know as the parent?

“Communication between providers and family members needs to be recognized as a clinical best practice.”*

  • You have the right to contact any mental health professional directly, and provide information relevant to your child, your family (e.g. marital conflict), and your family’s needs (e.g. bullied siblings). The professional can legally receive and document this information, but may not be able to discuss it with you.
  • You have the right to communicate freely and openly with a practitioner or teacher about anything you both already know—no confidentiality exists.
  • You have the right to schedule your own appointment with a professional without your teenager, and ask for information about how to get help for yourself and your family, and what kinds of help you may need.
  • You have the right to information about your child’s diagnosis and behavioral expectations, the course of your child’s treatment, and how you should interact with your child at home.
  • You have the right to a second opinion. And you have the right to change treatment or refuse treatment based on that second opinion.
  • You have to right to participate fully in medical decisions about your child. For example, you have the right to ask a doctor to stop or change medication or treatment that is creating behavior problems or side effects, which harm your ability to manage your teen.
  • You have the right to “information about the treatment plan, the safety plan, and progress toward goals of treatment.” *

What if your child’s provider claims they must keep all information confidential to protect patient privacy?

“While confidentiality is a fundamental component of a therapeutic relationship, it is not an absolute.”*

“Medical professionals can talk freely to family and friends, unless the patient objects after being notified of the intended communication. No signed authorization is necessary.”

–Susan McAndrew, Deputy Director of Health Information Privacy, U.S. Department of Health and Human Services

Teachers and mental health professionals have leeway with confidentiality.  Professionals often misunderstand the Health Information Privacy and Accountability Act (HIPAA), which defines what must be kept confidential. Many also misunderstand the Family Educational Rights and Privacy Act (FERPA) and state laws that govern confidentiality, so they tend to err on the side of confidentiality. However, the American Psychiatric Association states:

“Disclosures can sometimes be justified on the grounds that they are necessary to protect the patient. For instance, it is generally acceptable for a psychiatrist to warn a patient’s family or roommate when the patient is very depressed and has voiced suicidal thoughts”* or plans to harm others.

Professionals should provide explicit information about safety concerns: such as the warning signs of suicide; the need to adhere to medication and other treatment; an explanation of how your teen’s disorder can impair judgment; an explanation of reasons the teen must avoid substances like alcohol and drugs (including some over-the-counter drugs); and the need to remove the means for suicide, especially firearms, sharp objects, matches, chemicals, etc.

How doctors and therapists manage confidentiality

Their basic philosophy is to do what is in the best interest of their patient. For example, if the teen is in an abusive family situation or seeking care only on the condition of confidentiality, their privacy will be protected. “The default position is to maintain confidentiality unless the patient gives consent… However, [family members or friends] may need to be contacted to furnish historical information…” If the practitioner determines that the teen is (or is likely to become) harmful to himself or herself or to others, and will not consent, then they are… “justified in breaking confidentiality to the extent needed to address the safety of the patient and others.
–The American Medical Association, 2001, “The Principles of Medical Ethics With Annotations Especially Applicable to Psychiatry.”

A good professional will be honest with your teen, and tell them that they will communicate with parents based on what they already know. They will also tell your child that suicide or violence risk will always be communicated to you and/or an emergency medical service. From everyone’s perspective “It is always better to defend an inappropriate disclosure than to defend a failure to disclose with bad outcome (e.g. injury or death).”

Giving a teenager with behavioral problems the rights to make critical medical decisions is too risky!

I hope that families and mental health advocates can someday agree on how to maintain civil rights without letting a person control their future when they are not in their right mind. Until then, work with the system as best you can. I find that teachers and practitioners do their best to help families despite the restrictive civil rights and confidentiality mandates.  Good luck.

 

* Reference“The Clinician Should Maintain a Confidential Relationship With the Child or Adolescent While Developing Collaborative Relationships With Parents, Medical Providers, Other Mental Health Professionals, and Appropriate School Personnel,” developed by Jerry Gabay JD and Stewart S. Newman MD. The authors would like to acknowledge the support of the Oregon Council of Child and Adolescent Psychiatry for their support of this effort.

Coping with grief when a child loses their “self” or life due to mental illness

Coping with grief when a child loses their “self” or life due to mental illness

In the US military, the Purple Heart medal is awarded to a soldier who is wounded in battle, or who later dies of those wounds.

In the years of writing this blog, I have offered encouragement and hope for parents.  But hope and information cannot soften the impact of this horrible statistic:  The mortality rates of teens with mental disorders are 3 to 4 times more deadly than most childhood cancers, and the statistics only measure those deaths by suicide:  Mental illness more deadly than cancer for teens, young adults.

Death by suicide seems especially tragic because it appears to be a choice, and while we tell ourselves that mental illness is the cause, it’s not the same as a car accident being the cause or a tumor being the cause.  Unsuccessful suicide attempts are no less traumatic, like a cancer that keeps returning, because you can’t come to terms with a “maybe.”  A parent is held hostage by the anticipation of loss, a relentless moment-by-moment fear that your child will attempt again in the future until they are successful.  It’s an emotional ride one’s subconscious never ever forgets, and it becomes your PTSD.  You can carry it quietly with you for decades, until a sneak attack, when you find yourself overreacting to a news story, a scene in a movie, or a conversation with a friend.

My PTSD ambushed me once.  I was attending an evening class when suddenly a person next to me slammed down her cell phone, exclaimed “Oh my God!” and quickly grabbed up her things and dashed out.  I followed to check on her and see if I could help with something.  As she speed-walked to her car, she said her daughter had texted that she swallowed a poison because she was upset, but is now sorry and wants help.  I got back to the classroom in shock, trembling, and completely unable to focus.  It had been many years since I had received a similar message, but it felt like it had just happened again that moment.

You are not alone if you’ve ever secretly felt it would be a relief if your child ended their life, bringing peace to you both.  (And you wouldn’t be a bad parent, either)

There are other kinds of “deaths” to grieve

You face a death of hope when child with a serious mental disorder that takes a long slow trajectory through addictions, high risk behaviors, and falls apart in life’s many insults.  Families like ours bear witness but can’t intervene, or interventions don’t work.  All we can do is wait and hope and do what we can for our child, day by day, and banish thoughts of a different future.  I consoled myself with the knowledge that my child was getting by, and “getting b” was enough.

Another type of death caregivers face is the loss of their child’s “self” as they knew it, and their future as they imagined it.  A mentally ill child or teen can morph from a fresh young person in a world that is wide open to them, to a scary being we don’t recognize as our own and cannot understand–a stranger, a changeling, a flame snuffed out too soon.  It should not be this way.  It is unfair.  It is a tragedy.  You start healing the grief when you are able to make the commitment to do the best you can anyway.  YOU HAVE EARNED YOUR PURPLE HEART.

Any serious medical condition can devastate and traumatize a child’s family, but those with mental disorders impose a complicated trauma that’s hardly possible to resolve.  The following stories are actual examples.  Ask yourself:  how does one be a loving responsible parent in these situations?

–  When her daughter attempted suicide, an overwhelmed single mother discovered that her son had been sexually abusing and cutting her for 3 years, right under her nose.  The guilt she felt was quadrupled by the guilt laid on her by others.  She didn’t know how to go forward as a mother from here, after loving but failing both children.

–  A teen girl attempted to hang herself in a very public place, and many people found out before her parents.  The parents’ first trauma was the call from the emergency room, their second was from the shower of doubt others laid on them:  Where were you?  Why didn’t you help her before it got this far?  What did you do to drive her to this?

–  One couple devoted themselves to raising a difficult boy they adopted when he was 2.  At 9, after years of problems, he sexually assaulted a playmate, and they found themselves disgusted and repulsed.  The brokenhearted mother said she had long ago accepted that her boy would never be normal, but this was different.  She didn’t want him anymore.  She really really didn’t want him.  Some parents took their troubled children to Nebraska.*

You are not alone if you’ve ever secretly wanted to give your child away. You are not alone if you’re DONE.  (And you would not be a bad parent for thinking this.)

Consciously keep the good things alive.  Display photos of the real child you know or knew, the one without the brain problems.  Keep their writing or artwork or tests scored A+.  Other parents experiencing a loss do this, whether the losses are from death by disease, or death of self due to brain damage from an accident.  Speak often of the good things they were or are, as any proud parent might, keep the memories alive.

Get out of your trance and take yourself back to here and now.  When you notice yourself caught up in a train of thought and obsessing on your fear or paranoia, get back in the room—get back to driving that car or attending that meeting or straightening the house.  Get back to noticing the people you love, get back to making those helpful plans.  Central to the philosophy of dialectical behavioral therapy (DBT) is the concept of “Mindfulness.”

Remember this wisdom: take one day at a time.  You can handle one day, you can keep cool, do what must be done, feel accomplishment, in one day. Don’t think farther ahead.  Since you are the linchpin, the one holding up the world, you probably don’t have the luxury of taking a break, and may have to hold things together until there is time for your own healing.  The one-day-at-a-time approach is imperative.

When you’re leg is broken, you need a crutch.  When you’re heart and mind are broken, use the “crutch” of a medication for depression, anxiety, or sleep.  Do other healing things for yourself, whether exercise or therapy or asking for comfort from friends.  Acknowledge your wounds and admit this is too much handle.  You have earned your scars from bravery, so wear them as the badges of a hero.

A tragic event does not mean a tragic life.  I know a mother whose son completed suicide as a young adult in his 20’s.  She seemed remarkably cheerful and at peace with this.  She spoke lovingly of him often, and her email address comprised his birth date.  She continually did her grief work, was active in a suicide bereavement group, and often offered to visit with families facing such a loss.

— Margaret

*  In the United States in 2008, the state of Nebraska enacted a “Safe Haven” law to reduce the tragedy of infant child abuse and neglect.  The law allowed anyone to anonymously leave a child at a hospital with the promise that child would be cared for.  But something unexpected happened.  Parents from around the nation drove hundreds and hundreds of miles to leave their troubled older children instead.  Nebraskans eventually amended the law with strict age limits for infants only.

The 12 Commandments for Parents of Children with Behavioral Disorders

The 12 Commandments for Parents of Children with Behavioral Disorders

Parents!  Want to know how to make it?  These commandments were written for parents with children with serious (physical) disabilities, but they apply to you too.

  1. Thou art thy child’s best and most consistent advocate.
  2. Thou hast valuable information about your child. Professionals need your input.
  3. Thou shalt put it in writing and keep a copy.
  4. Thou shalt not hesitate to contact a higher authority if you can’t get the help you need.
  5. Thou shalt keep records.
  6. Thou shalt seek out information on your child’s condition.
  7. Thou shalt have permission to be less than perfect.
  8. Thou shalt not become a martyr, thus, thou shalt take a break now and then.
  9. Thou shalt maintain a sense of humor.
  10. Thou shalt always remember to tell people when they are doing a good job.
  11. Thou shalt encourage thy child to make decisions, because one day, he or she will need to do so on their own.
  12. Thou shalt love thy child, even when they don’t seem lovable.

– – – – – – – This is a revised version of “The 12 Commandments…” published by the Pacer Center (Parent Advocacy Coalition for Educational Rights) for children with physical and medical disabilities. www.pacer.org.

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 a child with schizoaffective disorder.

My Story:  Schizoaffective teens have both schizophrenic symptoms (thoughts disconnected from reality) and affective symptoms (unstable emotions and moods).   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, stop explaining everything.  You don’t understand; it’s like the TV’s on, the radio’s on, you’re talking to me, and I’m trying to read a book, and I can’t not think about every single thing.”  Right, I did not understand.  I sounded like she was processing 10,000 inputs at once.  The mental overload must be why she acted crazy.

Hallucinations feel real when you’re in them

My child had a slow early onset of hallucinatory experiences beginning about 11 or 12, and 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 you may be interested reading about what others experience (What hallucinations are like, from those who know.) I imagine they are like dreaming wide awake.  My child described a conversation that must have been inspired by the comedy show, 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 that it was impossible to hear what the teacher said.  Even today, during summers when she is happy, she seems to be hearing jokes.  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.

– – – – – – – 

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.”


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Don’t let siblings lose their childhood

Don’t let siblings lose their childhood

Siblings suffer when a brother’s or sister’s chronically severe behavior overwhelms the family.  Usually parents are too stressed and exhausted to give them attention.  Their needs are overlooked because their brother or sister demands so much.  ‘Normal’ siblings can be very negatively affected and start to have trouble in school, troubled behavior of their own, and emotional scars that affect them in the future.

It’s easy to see how siblings are affected, but there’s little information on how to raise well-adjusted siblings in a home with a troubled child.  On the one hand, they need to be kids with plenty of love, support, and opportunity.  On the other hand, siblings also need to be part of a family team when there’s a crisis.  They can’t avoid being involved!  I found it necessary to coach the siblings on precisely what to do, with the promise they could be a kid afterwards.  I found it necessary to normalize our peculiar family situation to them.  We were a ‘normal’ family for families like us.

The Siblings’ Bill of Rights

  1. The right to our own life outside the family
  2. The right to have our own concerns acknowledged
  3. The right not to be “perfect” to compensate for our troubled sister or brother
  4. The right to be treated as fairly as our troubled sister or brother
  5. The right to a safe environment
  6. The right to have our own friends and spend time with them
  7. The right to helpful information about our troubled sibling
  8. The right to be supported in our choice of future, and to pursue our future without continually caring for our troubled brother or sister
  9. The right to one-on-one time with our parents-caregivers
  10. The right to have our achievements and milestones celebrated
  11. The right to have our needs and opinions included in our sibling’s treatment plans.

From the Sibling Support Project – a national effort dedicated to the life-long concerns of brothers and sisters of people who have special health, developmental, or mental health concerns.  http://www.siblingsupport.org/

 

Find ample time to put the siblings first.  You cannot let your difficult child rob them of their childhood, their need to grow and be social and do well in school.  Your other children will be part of their brother’s or sister’s life forever, and they will need to be strong and supportive when the troubled one needs help as an adult.  To the parent or caregiver, this is for you:

“Most siblings of people with psychiatric disorders find that mental illness in a brother or sister is a tragic event that changes everyone’s life.  Strange, unpredictable behaviors in a loved one can be devastating, and your anxiety can be high as you struggle with each episode of illness and worry about the future.  It seems impossible at first, but most siblings find that over time they do gain the knowledge and skills to cope with mental illness effectively.  They do have strengths they never knew they had, and they can meet situations they never even anticipated.”
— National Alliance on Mental Illness (NAMI) July 3, 2001  www.nami.org

Sibling quotes – I once asked several young people about their experience living with a brother or sister with a mental disorder, and this is what they said:

“I escaped, I left in my mind.  I wouldn’t let anything bother me.  I dropped compassion and pretended nothing happened, I tried to forget about my family.”  Her sister was diagnosed with schizoaffective disorder at age 15.

“All I did was tried to get away when she blew out.  Then I got jealous of all the time my parents spent on her and not the rest of us.  Now I just let them handle it and I take my younger sisters away to protect them but they still hear the noise so I help them feel safe, but it’s hard sometimes.”  Her sister was diagnosed with bipolar disorder at age 9.

“To me, it was a death.  The brother I knew and who was so much like me in so many ways had died, and I didn’t know who this person was who was living in my house anymore.”  His brother was diagnosed with schizophrenia at age 18.

Share these messages with your other children. They will probably help them learn to live with or accept their troubled brother or sister:

  • “You cannot cure a mental disorder for a sibling.
  • No one is to blame for the illness.
  • No one knows the future; your sibling’s symptoms may get worse or they may improve, regardless of your efforts.
  • If you feel extreme resentment, you are giving too much.
  • It is as hard for the sibling to accept the disorder as it is for you.
  • Separate the person from the disorder.
  • It is not OK for you to be neglected.  You have emotional needs and wants, too.  The needs of the ill person do not always come first
  • The illness of a family member is nothing to be ashamed of.
  • You may have to revise your expectations of your sibling.  They may never be ‘normal’ but it’s OK.
  • Acknowledge the remarkable courage your sibling may show when dealing with a mental disorder.  Have compassion, they suffer and face a difficult life.
  • Strange behavior is a symptom of the disorder.  Don’t take it personally.
  • Don’t be afraid to ask your sibling if he or she is thinking about hurting him or herself.  Suicide is real.
  • If you can’t care for yourself, you can’t care for another.
  • It is important to have boundaries and to set clear limits.  You should expect your sibling to show respect for others.
  • It is natural to experience many and confusing emotions such as grief, guilt, fear, anger, sadness, hurt, confusion, and more.  You, not the ill person, are responsible for your own feelings.
  • You are not alone.  Sharing your thoughts and feelings in a support group has been helpful and enlightening for many.
  • Eventually you may see the silver lining in the storm clouds: your own increased awareness, sensitivity, receptivity, compassion, and maturity.  You may become less judgmental and self-centered, a better person.”

Excerpted from “Coping Tips for Siblings and Adult Children of Persons with Mental Illness.”  NAMI, 2001, www.nami.org

Support Your Child or Teen’s Recovery From a Disorder or Addiction

Support Your Child or Teen’s Recovery From a Disorder or Addiction

What recovery looks like – A person with a mental or emotional disorder who is in “recovery” lives a normal life and aren’t affected by their disorder.  They look and act normal.  At the very least, they have stable relationships, a steady job, a place to live, a regular diet, cleanliness, and regular mental health check-ins.  Recovery is maintained when the person pays attention to themselves and notices if their symptoms are starting, and then takes action to stop the symptoms.

Recovery is like the alcoholic who stops drinking–they still have an addiction, but they stop using.

What your child will need to sustain recovery as an adult:

INSIGHT  +  STABILITY  +  RESILIENCE

Insight – self awareness

Insight allows a child to recognize they have a problem, and choose to act to avoid the problem.  If insight is not possible, they need a toolbox of options that help them to respond appropriately, instead of reacting to chaotic messages in their brain. Knowing and admitting they have a problem, or knowing techniques for avoiding problems, are very powerful skills they need as adults.

Stability– fewer falls or softer falls

Your child is like a boat that’s easier to tip over than most other boats; any little wave will capsize them, and everyday life is full of waves, big and small.  Your job is to notice when the troubled child is starting to capsize and show them how to right the boat, or if that doesn’t work, how to use the lifesaver.  Eventually, your child will learn how to sense when trouble is coming on, avoid the thing that causes problems, and ask others for help.  Sense it.  Avoid it.  Ask for Help.

Resilience– bounce back when they fall

Troubled children have a much harder time bouncing back from problems.  They have extreme responses to simple disappointments like breaking a toy, or poor grades, or something as serious as the parents’ divorce.  Some even fall apart in joyous times because the emotional energy is too much!  You must be acutely aware of this–they will not get back on track by themselves.  Don’t worry that helping them will spoil them or “enable” them.  Eventually they will learn from you how you do it.

“…We are all born with an innate capacity for resilience, by which we are able to develop social competence, problem-solving skills, a critical consciousness, autonomy, and a sense of purpose.”

“Several research studies followed individuals over the course of a lifespan and consistently documented that between half and two-thirds of children growing up in families with mentally ill, alcoholic, abusive, or criminally involved parents, or in poverty-stricken or war-torn communities, do overcome the odds and turn a life trajectory of risk into one that manifests “resilience,” the term used to describe a set of qualities that foster a process of successful adaptation and transformation despite risk and adversity…”   http://www.athealth.com

Your troubled child’s recovery and how you help them achieve it

Your troubled child’s recovery and how you help them achieve it

What recovery looks like – A person with a mental or emotional disorder who is in “recovery” can look and act like anyone else.  They have:

  • stable relationships
  • a steady job or in school
  • a place to live
  • a proper diet
  • cleanliness
  • regular mental health check-ins.
Their mind is unstable. It’s like they stand on a beach ball that can topple them at any moment.

Recovery is maintained when your child can pay attention to themselves and notice if their symptoms are starting up, and then take action to stop the symptoms.  You teach them what to look for, and how to do a personal check-in.  It’s just as if they are monitoring any other problem in order to stay healthy such as: blood sugar, body temperature weight gain or loss, digestive system function (gut microbes).  In mental disorders, their signs and symptoms are not steady.  Anything can lead them from “OK” to “out of control” in an instant, and problems can last minutes to weeks to months.

What your child will need to sustain recovery as an adult:

INSIGHT  +  STABILITY  +  RESILIENCE

INSIGHT– self awareness

Insight allows a child to recognize they have a problem, and choose to act to avoid the problem.  If insight is not possible, they need a toolbox of options that help them to respond appropriately, instead of reacting to chaotic messages in their brain. Knowing and admitting they have a problem, or knowing techniques for avoiding problems, are very powerful skills they need as adults.

STABILITY – fewer falls or softer falls

Your child is like a boat that’s easier to tip over than most other boats; any little wave will capsize them, and everyday life is full of waves, big and small.  Your job is to notice when the troubled child is starting to capsize and show them how to right the boat, or if that doesn’t work, how to use the lifesaver.  Eventually, your child will learn how to sense when trouble is coming on, avoid the thing that causes problems, and ask others for help.

  • Sense it.
  • Avoid it.
  • Ask for Help.
Life throws punches. Vulnerable brains need to be more wary and resilient than the average person.

RESILIENCE – bounce back when they fall

Troubled children have a much harder time bouncing back from problems.  They have extreme responses to simple disappointments like breaking a toy, or poor grades, or something as serious as the parents’ divorce.  Some even fall apart in joyous times because the emotional energy is too much!  You must be acutely aware of this–they will not get back on track by themselves.  Don’t worry that helping them will spoil them or “enable” them.  Eventually they will learn from you how you do it.

“…We are all born with an innate capacity for resilience, by which we are able to develop social competence, problem-solving skills, a critical consciousness, autonomy, and a sense of purpose.”

     “Several research studies followed individuals over the course of a lifespan and consistently documented that between half and two-thirds of children growing up in families with mentally ill, alcoholic, abusive, or criminally involved parents, or in poverty-stricken or war-torn communities, do overcome the odds and turn a life trajectory of risk into one that manifests “resilience,” the term used to describe a set of qualities that foster a process of successful adaptation and transformation despite risk and adversity…”   http://www.athealth.com

–Margaret

 

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Mental illness is more deadly than cancer for teens, young adults

Mental illness is more deadly than cancer for teens, young adults

Why isn’t everyone more upset?

A disease is killing our children and it’s more deadly than cancer and leukemia!  Did you know it was mental illness?

Out of curiosity, I did some research on child mortality rates from various causes because I wanted to know how death from mental illnesses compared with other fatal illnesses of childhood and adolescence. The results were astonishing, unexpected, and disturbing.

Look at the highest bars in this graph. They are 3-4 times the height of average cancer and diabetes rates in children. There are gaps in the available data, but this simple comparison is disturbing.

* The starting point for the mortality rates of medical illnesses was the website for the Center for Disease Control and Prevention www.cdcp.gov  in Atlanta; the starting point for the mental illnesses was the website for the National Institute for Mental Health, www.nimh.gov.

** The suicide data was from those with depression, bipolar disorder, schizophrenia, and psychotic disorders-unspecified.  (Suicide from other mental health causes, such as borderline personality disorder and co-morbid substance abuse is also prevalent, but I could not find data for children to young adult age ranges.)

On suicide:

  • It’s often normal for children and young people to think about suicide, but just in their imagination. They might consider it during some painful time in their lives, but there are no plans made or steps taken.  When the difficult times are over, they don’t think about it any more.
  • Young people with early onset mental illness can’t endure much stress; thoughts of suicide recur over time, starting as early as age 6 or 7.  These children are vulnerable to repeated intrusive suicidal thoughts because they live with a combination biological, psychological, and social/relationship causes (called “biopsychosocial”).  More about this is explained here: “Use the “S” Word: Talk with your Child about Suicide.”
  • There are ‘fast’ and ‘slow’ suicides in young people.
    • The ‘fast’ ones are 1) direct self-harm that has been planned, or 2) spur-of-the-moment suicide due to an extreme emotional reaction to a single intolerable event (examples: a boyfriend/girlfriend or best friend dies; a teen has a serious fight with a parent and (without planning) wants to ‘get back’).
    • The ‘slow’ suicides result from a persistent pattern of harmful behaviors that eventually lead to death.  Young people struggling with anorexia can die by heart failure or other causes due to their weakened body.  Others abuse substances and/or participate in extremely risky activities that expose them to multiple lethal situations:  overdose, criminal environments, disease.

The chart above screams out for a changes in attitude, policy, and investment in children’s mental health treatment and suicide prevention.  I had no idea that death rates from mental illness could be 3 to 4 times higher than most cancers and leukemia.  It is imperative that young people with mental health issues receive as aggressive and sensitive treatment as is expected and demanded of medical systems that treat cancer in children.

 

Parents: talk about this. Talk to your child; share it on social media; and talk to mental health organizations about what you can do.

The data on mortality rates for mental illnesses was difficult to find, and it required searches in many different medical journals and websites.  I chose to use the data on cancer, leukemia, and diabetes because the mortality rates from these are high and because deaths from all other causes were insignificant by comparison (motor vehicle accidents are the one exception).  In this graph, the death rates for cancer and leukemia are averages for the different forms of each, and in the medical journals they were presented together.

I welcome additions or corrections of this data from any other sources, and encourage readers to investigate this for themselves.

–Margaret