Tag: stigma

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

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

When faith helps

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

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

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

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

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

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

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

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

When faith harms

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

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

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

Stigmatization from a faith community is a cruel betrayal.

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

Testimonials

Mother with five children, one with bipolar disorder:

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

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

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

Mother of two children, one with schizoaffective disorder:

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

Some good news

FaithNet

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

Key Ministry

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

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

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

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

________________________________________

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

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

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

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

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

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

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

Life at home is a war zone

Life at home is a war zone

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

Welcome to the War Zone

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

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

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

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

Margaret

– – – – –

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

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

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

On child psychiatry and stigma

On child psychiatry and stigma

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

Our Own Worst Enemies
Nada Logan Stotland, MD, MPH

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

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

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

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

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

–Margaret

Teachers and Stigma – Judging and Blaming Families

Teachers and Stigma – Judging and Blaming Families

As parents of troubled children, we already know that our child’s disorder or behavior will not work in most classrooms.  Teachers don’t need to tell us this or explain why our child needs to change in order to learn–we already stay up at night worrying how our child or teen will make it in the world.  Most parents have tried everything:  we’ve looked for other educational options (which almost never exist or we don’t qualify), we’ve asked or pleaded for help, we’ve read books and scoured the internet for advice…  When nothing works, some parents and caregivers just give up and try to muddle through.

When it comes to working with teachers, it feels like you can’t win for losing

Those parents who’ve tried everything become deeply frustrated and take it out on school staff.  This reaction makes sense when you’ve been there like I have.  I probably looked bad at meetings, angry, stressed, anxious, and confused—and that’s how I was treated.  I could sense teachers assumed I was this way all the time and thus the cause of my child’s disorder.

Those parents who give up don’t show up.  They can’t face another school meeting to listen to the litany of their child’s problems, feeling nagged with advice given in a tone of impatience, never getting help, hope, or heard.  Not showing up also makes perfect sense.  Who wants another downer?  It’s best to stay home and conserve precious emotional energy.  These parents look apathetic and neglectful at best–I personally know a couple who’ve given up.  I’ve heard school staff wondering aloud if these parents were using drugs, abusive, or criminally neglectful.  I personally knew they weren’t.

Teachers have the same paradoxical attitudes held by the public at large when it comes to troubled children.  They may try to be neutral when they work with parents, but underlying attitudes and feelings still come out:

  • We sympathize but you’re still to blame;
  • You can change things if you want to, but you don’t really care;
  • We know what your child needs, you don’t.

I truly believe teachers care about children and teens which is why they are teachers.  Their professional education centers on children’s development and learning, but not on the intricacies and psychology of family relationships or children’s mental health!  Their qualifications and license are for giving their students a quality education, not for doing social work with families.  Even if teachers recognize that families struggle with their child, there is still a sense that the cause of a student’s lack of achievement “sits squarely on the shoulders of parents”  who simply “don’t care.” *

* Taliaferro, JD; DeCuir-Gunby, J; Allen-Eckard, K (2009).  ‘I can see parents being reluctant’: Perceptions of parental involvement using child and family teams in schools.  Child & Family Social Work, 14, 278-288

> Find out more about this research at the Research and Training Center http://www.rtc.pdx.edu/ – “School Staff Perceptions of Parental Involvement,” August 2009, Issue #164 <

Mixed messages from schools

 

Teachers and schools give mixed signals to families, on the one hand encouraging parents to work with their child’s teacher, and on the other hand becoming “offended when… parents would take the side of their children or question a teacher’s assessment.” *  When it comes to mental health, teachers simply aren’t trained to recognize or diagnose disorders.

Parents with troubled kids in school have additional responsibilities, but their energy and time reserves are the lowest: they have Child and Family Team (CFT) meetings to attend; Individual Education Plan (IEP) meetings; waivers, Releases of Information (ROIs); and many communication attempts to follow through on each of these.

Teachers need to believe in the ability of parents to contribute to their child’s well being and understand parents’ need for support when children have mental or emotional disorders.  And “…schools must change practices so that information can be shared with a socially just approach.  Schools must meet families where they are rather than embracing misperceptions and stereotypes…” *

Let’s change this situation, and here’s how you can help

If you are a teacher, parent, or other education advocate, there’s a program available from the National Alliance on Mental Illness (NAMI) to develop understanding and partnership between schools and parents with troubled children.  It’s called Parents and Teachers as Allies.

This is an in-service mental health education program designed for teachers, administrators, school health professionals, families, and others in the school community.  The curriculum focuses on helping everyone better understand the early warning signs of mental illnesses in children and adolescents and how best to intervene, and how best schools can communicate with families about mental health-related concerns.

The program is also designed to target schools in urban, suburban, rural, and culturally-diverse communities.  The toolkit is being developed to be culturally sensitive and will include a Spanish language version.

For more information about this program, please contact: Bianca Ruffin, Program Assistant, Child & Adolescent Action Center, Email: biancar@nami.org, Phone:  703.516.0698

Parent to Parent Guidance

Parent to Parent Guidance

Margaret Puckette is a Certified Parent Support Provider, and helps parents with tailored advice for raising their troubled child, teen, or young adult. She is a parent who understands that parents and families need realistic practical guidance for maintaining their lives without stress. Margaret has coached and mentored families for over 20 years. She is an author & speaker, and believes parent & family support is essential. Mentally healthy parents with the right skills raise mentally healthy children.

You Can Handle This.

You Can Handle This.

You are not alone. Your situation is 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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