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 however–explaining the mental health risks could go 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 affecting health (rotten food, unclean garments, chemicals). 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 him- 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.

How am I doing? Please rate this article, thanks.  Margaret

* 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.

Five-minute wisdom for parenting troubled children and teens

Five-minute wisdom for parenting troubled children and teens

From many years of  counseling parents, I’ve found the following parenting wisdom quickly helps parents understand, clarify priorities, and take the next steps.

You are not alone. All families experience the same fears no matter what the child’s challenges: guilt, anger, frustration, failure, and mental and physical exhaustion.

There is a way. The steps to finding peace in the home are the same for all families.

You can start now. You can improve behavior without having a diagnosis, and the techniques work for the majority of difficult children.

There is reason for HOPE. They have the capacity to do better. With support and treatment, difficult children improve.

Have realistic expectations: They may not be ready for adulthood, and may need extra support into their 20’s… but that’s OK. There’s time to catch up with their peers.

Plan ahead for a crisis, brainstorm options for an effective response and create a checklist. We can’t think clearly in a tension-filled moment.

GOOD Things to do for Your CHILD or TEEN

Pay attention to STRENGTHS not weaknesses. Always find something great about them.

Guide them to their gifts. Give them ample opportunity to do what they are already good at.

GOOD Things to do for YOU

o Be your own cheerleader. Silently think, “I can handle this;” “I’m the one in control.

o Regularly talk through your feelings with others who understand and won’t judge.

o Get a life, maintain personal interests, and set thoughts of the child aside without guilt.

o Commit to doing the best you can, and accept that this enough – plan to let go someday.

You’ve done a good job when they are able to take responsibility for their own care. This is a monumental personal achievement!

KEYS to CALM

In a neutral patient voice, give directions or requests . You will need to repeat yourself, calmly, several times. Your voice should not communicate strong emotions. Tone of voice, not words or volume, is what creates a bad response.

Don’t rush calm. Give the child plenty of time to unwind and settle. Calm is more important than quick.

Ensure there’s a calm place to go – a time-out space, even for you.

Get an appropriate therapy animal – a calm and durable creature unlikely to be harmed.

Reduce chaos in your home: noise, disorder, family emotional upheavals, the intrusive stimulation of an always-on TV, etc.

Ideas for MANAGING resistance

You want your child to be resistant to the negative things they’ll face in life. It represents willpower, and is a strength to cultivate.

o Be quiet and LISTEN. If you respond, address how they feel, not what they say.

o Use reverse psychology-ask them to do something you don’t want them to do, so they can defy you and do the opposite.

o Choose your battles. Let them think they’ve won on occasion.

o For an ODD child, give multiple instructions at once, including things they do and don’t want to do. It becomes too much work to sort out what to defy.

o Actively ignore – Stay in the vicinity but don’t respond, look away, act like you can’t hear. They eventually give up. Works best for ages 2 – 12.

o Mix it up – Be unpredictable. Give a reward sometimes but not all the time. Try new ways to use incentives or set boundaries and structure.

DON’T make these Nine COMMON Parenting MISTAKES

1. Treat your home like a democracy, let your child have an equal say in decisions.

2. Find fault with them and tell them about it repeatedly. If they do something positive, it’s not good enough.

3. Pretend your child has no reason for their behavior. Ignore his or her needs or challenges. Are they being bullied? Are they having a hard time sleeping? Is your home too chaotic?

4. Make rules and only enforce them once in a while, or have consequence come later.

5. Don’t treat your child appropriately for his or her age. Make long explanations to a 3-year-old about your reasoning. Assume a teen wants to be just like you.

6. Expect common sense from children who are too young (5), or from young adults with a long track record of not showing common sense.

7. Keep trying the same things that still don’t work. Repeat yourself, scream, show how frustrated you are with them.

8. Jump to conclusions that demonize the child. “You are manipulative and deceitful,” “You don’t listen to me on purpose,” “I’m tired of your selfishness…”

9. Make your child responsible for your feelings. If you lose your cool, insist they apologize.

Problem SYMPTOMS, not problem children

– Does not show common sense and is not influenced by reason and logic;

– Has no instincts for self-preservation, and poor personal boundaries;

– Has no well-adjusted friends; has friends who are risky or troublesome;

– Doesn’t respond to rewards and consequences;

– Has limited character strengths: honesty, tolerance, respect for others, self-control;

– Does not make plans they can realistically achieve, hangs on to fantasies;

– Acts younger than their peers. Will not be ready for adulthood by 18;

– Lives in the here and now; doesn’t think about the past or future;

– Does not notice their effect on others.

Your PRIORITIES in Order

1. You and your primary relationship(s)

2. Basic needs and responsibilities: housing, clothing, food, income, health

3. Your challenged child or teen.

How parents spend their time when a child has a mental illness. Make the slices equal in size–too much for one, too little for others.
Time spent on all the important things better supports the child and the family they depend on.

 

 

 

 

Good messages for siblings (and parents) of a troubled child or teen

Good messages for siblings (and parents) of a troubled child or teen

Your other children already know something is terribly wrong, and they deserve to hear the truth from you.

Most are old enough. They see other children in school and discover other families are nicer, so they don’t talk about their own. They are afraid to bring friends over to visit because of how their troubled brother or sister behaves–pestering them, upsetting them–then those friends talk about it with fellow students and their own parents. Word gets out about your family and people form opinions, especially teachers.

Siblings also feel unsafe and insecure. They never know what’s going to happen! Tell them the truth and trust them to understand and appreciate your candor.

  • 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 ill 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 or upsetting 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,” from the National Alliance on Mental Illness (NAMI), 2001, www.nami.org.

Therapy types explained: DBT, CBT, CPS, and others

Therapy types explained: DBT, CBT, CPS, and others

The fantastic news about the brain is that it can heal itself by talking with someone! Ample evidence backs this up.

The therapist or psychologist who works with your child or teen will use a type of therapy or “modality” based on their symptoms or diagnosis, because some work better for mood disorders, some work better for defiant children, some work better for borderlines, and so forth. (In thought disorders like autism and schizophrenia, talk therapy has limits. Those on the autism spectrum need specialized interactions due to their processing issues. Those on the schizophreniform spectrum need medication to think logically before starting

Therapy models. Each type of therapy follows a model, and five are covered in this article. Your child’s therapist must be trained and practiced in any model they use. Why? It’s a matter of quality control. A therapist who has fidelity to a model (adheres to protocol) will help the most people most of the time, because that model has data to prove that the majority will benefit–the ones in the center section of the Bell Curve. (Therapists include psychiatrists, psychologists, and psychotherapists with MSW (Masters in Social Work), LCSW (Licensed Clinical Social Worker) and other licensure.)

Therapy models

CBT – cognitive behavioral therapy
CBT works when the child can examine their own feelings and make sense of them—the “cognitive” part. They learn to understand what affects them and why. The therapist will guide your child to create a list of options for themselves for when they face the next stressful situation that pops up in their lives. CBT helps a person think their way out of the confusion and have plans in place for appropriate actions. It works for mood disorders and anxiety, and some thought disorders if person has ‘insight’ (able to notice when they are behaving or thinking irrationally). CBT is one of the most widely used therapeutic models because it works for people who are relatively stable but enduring a difficult life situation (divorce, medical illness, job loss, and other big stressors).

DBT – dialectical behavioral therapy
DBT is unusual in that it can help anyone for any reason! The term “dialectical” describes how a patient learns to hold two opposing truths in their mind and respond effectively to the discomfort and emotions this causes. DBT is the one therapy model that can work for people with borderline personality disorder, who are considered the hardest to treat. It also helps those with mood dysregulation, those who’ve thought about or attempted suicide, or those with uncontrollable and negative responses to the world, such as oppositional defiant disorder. DBT relies less on personal self-examination and analysis, and instead concentrates on self calming, tolerating stress without overreacting, accurately perceiving the nature of a conflict, and communicating with others appropriately. Anyone can benefit from DBT. Notice how commonly people hear bad news and immediately expect the worst, then act to address the worst possible outcome? Does your child do this, only to extremes?

EMDR – eye movement desensitization and reprocessing
The goal of EMDR therapy is to help a person process extremely distressing memories of trauma and mitigate their torturous subconscious influence so children and adults can adapt and cope when memories are triggered in the future. EMDR is used for people with PTSD (physical, sexual, or emotional abuse) and other traumas such as from war, accidents, and major disasters. The therapy process uses rhythmic stimuli as a distraction during the precise moments when the person relives the traumatic memory—eye movement back and forth (by following a swinging object or a therapist’s hand), clapping, or listening to tones switching from ear to ear through headphones. The person does not have to talk about the horrible memory, so EMDR is less stressful—so important for a trauma survivor! EMDR works but there are no acceptable explanations. It is based on a belief that the memory and associated stimuli of the event must be processed to remove it from “an isolated memory network” where it creates havoc.

Parents as therapists

There are two proven models of therapy that are taught to parents to practice with their children in the home. Like the other models, they don’t work for every child, but they work for most children with a certain range of behaviors, rages, resistance, and physical violence, which can be caused by ODD, ADHD, and depression/bipolar disorders.

CPS – collaborative problem solving
CPS can be learned by anyone to manage an intensely frustrated child who goes into uncontrollable fits or tantrums, and the parent can do nothing to calm them down. The fits may last hours, and must run out of steam on their own. Afterwards, the child is often remorseful. Why? Their brain is “chronically inflexible” and has difficulty with the unexpected, switching from one situation to another or one plan to another. Using CPS, a parent doesn’t enforce rules per se, but negotiates with child so that they together come up with a win-win solution. This is very counterintuitive! The parent does not give away their authority, but offers the child an acceptable choice. For example, if a child can’t get a red jacket because there aren’t any in their size, and they must have red (!), the parent asks the child if they want to order one and wait 2 weeks, or if they will accept another color. This seems fair to the child because they have a say, and much easier on the parent because the child accepts the outcome they’ve chosen.

PMT – parent management training
PMT refers to a proven intensive educational program for parents to teach them skills for managing extremely difficult children, especially those with ODD. PMT helps parents assert consistency and predictability at home and in school, and promote positive social behavior in their child. The parents are also trained to change their own behavior towards their child, and taught how to analyze different home/school situations, “then apply moment-to-moment positive reinforcement or punishment” (called interventions) based on what is happening. The punishments are humane, such as taking time outs. It is hard on the parents, but works for children with serious behavior problems in addition to ODD: Conduct disorder, ADHD, and autism spectrum disorders.

What makes a good therapist? Because multiple models are out there, a really skilled therapist will figure out which model your child needs once they get to know them, and they will apply parts of different models depending on your child’s individual challenges. That same skilled therapist will also be a cheerleader for your child, helping them feel good about themselves (and you), helping them discover their talents, and helping them to stay committed to their need for self-care. This is the very definition of a good therapist! Therapy is hard to take for anyone, but your child will trust a good therapist if they feel they have their best interests. Chemistry is important. If your child doesn’t like the therapist or make progress, it’s worth spending the time to find someone else who’s a better match. If the therapist has professional ethics; they will recognize they are not a fit and recommend someone else.

I know of a 10-year old child whose therapist dragged out appointments for a year with zero progress or results. From the start, the child didn’t like her and simply refused to talk with her. And this child, now 11, refuses any therapy because “it’s boring and a waste of time.” What an unfortunate consequence!

How you know you have a good therapist. A good therapist will be able to discover something valuable that brings light on your child’s situation after the very first session. They should ask you for background information about your child, and listen to you when you talk about recent problematic situations. They cannot talk to you about your child’s therapy, but they can encourage you to partner with them, and should recognize your need (your family’s need) for your child to function as normally as possible. You can ask to have therapy together with your child if its appropriate. If the therapist can’t connect meaningfully with your child after a few weeks, ask them about this. If you have any doubts about the therapist, share them, and expect to have a thoughtful, respectful explanation.

Which therapy is best for your child?

Seek a therapy provider with knowledge of all of them, and with experience treating children and teens. Ask about a specialty when you make the initial contact, and ask about a model you think fits your child’s behaviors (based on their descriptions). You can get a one-time assessment from a therapist for an opinion on which model to use. The best way to find a good therapist is through personal referrals: your child’s doctor or psychiatrist, support groups, school counselors, and other parents.

Coping with grief when a child attempts (or completes) suicide

Coping with grief when a child attempts (or completes) suicide

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 shared practical information on behavior and treatment, and 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 recently.  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)

But death is more than self-inflicted suicide.  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 unstable reactions to 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 by 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 found out about it before her parents.  Their 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?  And it was unending.  The daughter threw these doubts back at her parents repeatedly.  There were several inappropriate people in the community who wanted to “rescue” the daughter, including a teacher, but undermined the parents’ authority completely, and their ability to get treatment for the girl.

–  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.  (I’ve heard parents talk half-jokingly about taking their offspring to Nebraska. *)

You are not alone if you’ve ever secretly wanted your child to be taken away to never live with you again. You are not alone if you feel 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

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

*  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.

The blessings and curses of schizophrenia – A father’s view

The blessings and curses of schizophrenia – A father’s view

This guest article is by Don Moore.

Some families are presented with the dual dilemmas of dealing with a child that is both gifted and troubled.  Such is the case with my daughter who in spite of her schizophrenia nearly ended up on the popular television show American Idol.

Most fathers would be quite pleased if children came with owner’s manuals.  Mind you, the great majority would not read the manual, but prefer to use their own experiences and logic to determine appropriate actions in parenting.  Owner’s guides would be a fine reference resource to look up how things were to be done after trying their own thoroughly contemplated actions before resorting to some sort of predetermined remedial action.

Particularly in American society, a Man’s perspective is to reason out and come up with solutions to problems they encounter or to follow a set of requirements at their employment to retain their job.  Sure, there are exceptions, especially for those who pursue artistic endeavors, but even these can often be reduced to techniques, learned, practiced and then applied.  (More about men’s approaches to parenting is here:  For men who raise troubled kids) 

Like many other parents and especially fathers, my work revolves around the repair of things and when I first encountered my daughter’s difficulties with life, I followed an approach of analyze, find a solution and apply a remedial fix to my interactions with her.

Much of Western medicine follows this thought process as well; study the problem, recommend a treatment and magically the problem will be gone.  The real problem is that this simplified view does not reflect the nature of the underlying problem with many mental health issues.  An especially difficult disorder to use this approach with is schizophrenia.  Because we define this illness as a set of behaviors and characteristics and each person can have or not have many of the characteristics, the approaches that I followed in dealing with my daughter’s situation were woefully inadequate as well as misguided.

In fact, most of my approach to dealing with my daughter would have been ineffective with just about any teenager, much less one suffering from hearing voices and disjointed thinking.

If the point of reference that you are using to deal with a child with schizophrenia is that the child is somehow concerned with what effect their behavior will have upon you, you are sadly mistaken.  This is precisely what I thought when I would painfully explain why some task had to be done, like load a dishwasher.  If she could not complete the task, it was obviously because she was trying to agitate me and I responded by becoming agitated and angry at either her lack of compliance with my instructions or the poor quality of her efforts.  As the behavioral difficulties became more serious my frustrations escalated accordingly.  The escalations were equally ineffective.

All of the difficulties came to a crisis point when my daughter left to attend a performing arts college in Minneapolis.  There her difficulties took on another level of seriousness and she returned home.  Under the care of a psychiatrist, some progress was made and my wife and I elected to take a class in dialectic behavioral therapy (DBT) for parents.  The class, in conjunction with some wise advice from her psychiatrist finally got me to see that her difficulties were from within her own mind and the best approach was to understand her behavior reflected her struggles to deal with her view of the world and were not based upon a master plan to disappoint or offend me personally.  DBT techniques allow you to understand the effect of delusions on the child’s behavior and instruct you to deal with the feelings that those delusions have on the child’s behavior. There is not an acceptance of the truth of the delusion, but there is an acceptance of how the person feels about the thoughts they have.  Having someone verify their feeling about the delusion (It must be frightening to believe the government is using thought control on everyone) without accepting the truth of the idea helps the person modify their response to the delusional thought.

Once there is an understanding of the thought issues facing the person with schizophrenia, there is hope that the narrative that their brain has created for their existence in the world can be refocused to include new ways of viewing the world and how they are to interact with those around them.  Proposing alternatives to how they see the world is a method of getting them to rethink the ideas that they hold and readjust to a new way of behaving.  It is by no means as simple as an owner’s guide, but progress is possible.

Tracy and Emmy winner Joey Pantolino

In my case, the treatments my daughter received helped considerably at first and she was able to make a journey to American Idol tryouts, meet the famous judges in person and come one audition from actually being on the television show.  You can see her story in the February 2006 SZ Digest magazine http://www.schizophreniadigest.com/e107_plugins/szproducts/images/articles/2006_spring_story1.pdf  or at my website, www.matersofthemind.info .

Another aspect of mental illness that seems to be misunderstood is the wide range of seriousness and variation with symptoms.  My family has been both fortunate and unfortunate.  My daughter has been blessed with a set of skills in singing that brought her national recognition for her efforts with American Idol, but did not ultimately reward her with employable skills or remediate her disease.  There are others with schizophrenia with truly exceptional talents who find jobs and recovery.  There are also those who struggle with more serious symptoms.  Whatever the course of your loved one’s illness, there is some measure of comfort in seeking and finding skills that will help in dealing with the issues that are confronting them.  Not the least of these skills are understanding the emotional turmoil that the person feels in dealing with their view of the world and helping them deal with the issues surrounding that view.

Tracy and Senator Gordon Smith (wrote and passed mental health legislation)

During her American Idol experience, my daughter wrote and recorded a song entitled “I am Not Alone.”   There is no reason that any family or person should be alone in their efforts to deal with their condition.  While it may sometimes feel lonely, seeking out resources and learning about the experiences of other people with similar challenges will help in your efforts to create not an owners’ manual but a guide to help you understand alternatives while you seek a better path to follow.  You may not cure the disease, but you can respond better to the challenges you face in your own journey.

–Don Moore

I offer deep gratitude to both Don and Tracy for sharing their remarkable experiences

Margaret

Parent to Parent Guidance

Parent to Parent Guidance

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

You Can Handle This.

You Can Handle This.

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

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

Practical Guide for Parents

Practical Guide for Parents

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