Tag Archives: mental health stigma

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

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

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Life at home is a war zone

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

Welcome to the War Zone

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

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

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

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

Margaret

– – – – –

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

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

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

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Filed under Grief, mental illness, parenting, teens, troubled children, troubled children

Teachers and stigma – judging and blaming families

Teachers and stigma – judging and blaming families
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Troubled kids' families also want improved classroom behaviorAs parents of troubled children, we already know that our child’s disorder or behavior will not work in most classrooms.  No one needs 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 schools, 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 staff 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 like this.  I’ve heard school staff wondering aloud if the parents were using drugs, abusive, or criminally neglectful.  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:  there are Child and Family Team (CFT) meetings, Individual Education Plan (IEP) meetings, waivers, Releases of Information (ROIs), and many communication attempts to follow through on 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 Boys fighting

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

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Filed under depression, mental illness, oppositional defiant disorder, parenting

Stigma is prejudice, and harmful to children

Stigma is prejudice, and harmful to children
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Stigma victimizes the victimes

Stigmatization, blame, judgment… It only takes a few individuals to harm a child or family with their words, but it takes a whole society to allow it.  In this article, I’m going to present recent research on the negative stereotyping of families and children with mental disorders, and share stories from families I know.  I hope readers will be empowered to speak out against this form of prejudice and mobilized into changing our society’s attitudes.

Have you ever heard of a bake sale to help a child get treatment for a mental disorder or addiction?
Have you ever heard of a bake sale to help a child get treatment for a mental disorder or addiction?

Puckette©2008

Stigma takes many forms.

The most common scenario of stigma is when you are seen as a bad parent, perhaps even an abusive one, or your child is seen as stupid, spoiled, attention-getting, or manipulative.  Another form of stigma is having others show disrespect to parents who seek help from the mental health profession.  Psychologists are “flakes,” and families  who see them are “wackos.”  “Where’s your faith?”, some say, or “why don’t you quit making excuses for your child and give them real consequences?”

One of the more destructive forms of stigma is the condemnation parents receive when they “drug their child to fix them.”  Too many believe drugs turn children into “zombies” (see research study below).  Because of the stigma of treatment, I’ve seen many parents try every alternative treatment possible to help their child, only to have their child struggle year after year in school, fall farther behind their peers, make no progress in therapy, and other setbacks that medicines can prevent.  These parents cling to the belief that they are doing the right thing, yet some children really need medicines, and the drugs don’t turn them into zombies.  [In today’s treatment approaches, drugs are always considered a piece of the treatment puzzle, never the complete answer.]

A mother’s story about her experience with stigmatization:

This mother lost her best friend of 20 years because the friend got tired of hearing the mom talk about her very troubled 10-year-old son.  In frustration, the friend wrote her a letter saying the mom was neurotic, and that she should quit trying to control her son, that her son’s behavior was a cry for help.  The friend said she needed to set her son free and get help for her emotional problems, and that she wasn’t going to “enable” this mom anymore by being her friend.  The mom was stunned and hurt by the letter.  She intellectualized that she didn’t need a friend like this, but her heart was nonetheless broken by the betrayal.  The son turned out to have brain damage from a genetic disorder and it was getting worse.

What you can do when someone makes thoughtless remarks, lectures you, or avoids you because of your child

From my blog post November 2008:

http://raisingtroubledkids.wordpress.com/2008/11/25/ideas-for-what-to-do-when-youre-blamed-and-judged/

First, resist defending yourself; it can attract more unwanted attention and disagreement.  You don’t have the time or emotional energy to explain or teach someone who will challenge everything you say.  Do everything you can to avoid people like this—many have had to cut off some family members and friends, and even their clergy or religious communities.

My story:  when my child was diagnosed with a serious mental disorder, I stood up in front of my church congregation, explained what was happening, and asked for prayers for my family.  At the end of that service, people started avoiding me.  There were no more hello’s.  There wasn’t even eye contact.  The abrupt isolation from people I knew was devastating and I stopped attending.  What did I say?  Why did this happen?  I thought if my child had a ‘socially-acceptable’ cancer others would know what to do or say to ease the isolation and grief.

Second, actively seek out supportive people who just listen.  You need as large as possible a network of compassionate people around you.  You may be surprised how many people have a loved one with a mental or emotional disorder, and how many are willing to help because they completely understand what you’re going through.

Third, politely and assertively say thanks but no thanks.  Try something like this:  “Thanks for showing interest, but we are getting the help we need from doctors we trust.” Or simply, “please don’t offer me advice I didn’t ask for.”  No apologies.

– – – – – – –

Public Perceptions Harsh of Kids, Mental Health (excerpt)

May 1, 2007   (USA TODAY)

Though the subject has been analyzed in adults, until now there has been limited research illuminating how the public perceives children with mental disorders such as depression and attention deficit disorders, according to experts from Indiana University, the University of Virginia and Columbia University.  The findings are published in the May 2007 issue of Psychiatric Services.

The study, based on in-person interviews with more than 1,300 adults, indicates that people are highly skeptical about the use of psychiatric medications in children.  Results also show that Americans believe children with depression are more prone to violence and that if a child receives help for a mental disorder, rejection at school is likely.

“The results show that people believe children will be affected negatively if they receive treatment for mental health problems,” says study author Bernice Pescosolido, director of the Indiana Consortium for Mental Health Services Research, in Bloomington.  “Nothing could be further from the truth.  These misconceptions are a serious impediment to the welfare of these children.

According to the study:

  • those interviewed believed that doctors overmedicate children with depression and ADHD and that drugs have long-term harm on a child’s development.  More than half believed that psychiatric medications “turn kids into zombies.”
  • respondents thought children with depression would be dangerous to others; 31% believed children with ADHD would pose a danger.
  • Respondents said rejection at school is likely if a child goes for treatment, and 43% believe that the stigma associated with seeking treatment would follow them into adulthood.

Pescosolido and her colleagues say such stigma surrounding mental illness — misconceptions based on perception rather than fact — have been shown to be devastating to children’s emotional and social well-being.

Population studies show that, at any point in time, 10% to 15% of children and adolescents have some symptoms of depression.  About 4 million children, or 6.5%, have been diagnosed with ADHD, only 2% less than the number of children with asthma.

“People really need to understand that these are not rare conditions,” says Patricia Quinn, a developmental pediatrician in Washington, D.C.

To banish the stigma linked to mental health problems in children, the public has to get past labels and misconceptions, Pescosolido says.   Normalizing these conditions would help too, Quinn says.  “We need to view depression and ADHD like we do allergies,” she says. “They are very treatable.”

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Filed under bipolar disorder, borderline personality disorder, depression, mental illness, oppositional defiant disorder, parenting, schizoaffective disorder, schizophrenia, teens

What to do when you’re blamed for your child’s behavior

What to do when you’re blamed for your child’s behavior
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Our sick kids deserve compassion too

Our sick kids deserve compassion too

I have yet to meet one family with a troubled child that has not felt blamed or judged by close people in their lives:  best friends, family members, a religious community, co-workers, even medical and mental health providers.  Nothing could be more wrong or more hurtful to the family’s well being.  Blame adds emotional burdens on top of what they already face, and can undermine an already shaky hope and faith. 

 

Parents like us are aware that many people are not comfortable around a child with bizarre or extreme behaviors, like our child.  We understand this.  After all, who else knows more about the stress they create?  But it is unacceptable to be blamed or judged by others on our parenting, our character, our child, and/or presumed to be abusing our child.  This is simply not true for the overwhelming majority of families with troubled children.

 

These are some things that have helped caregivers cope with, and overcome, the debilitating effect of judgment and blame.

 

First, resist defending yourself; it will only attract more unwanted attention and disagreement.  You don’t have the time or emotional energy to teach someone who resists and challenges everything you say with countless questions and misinformation.  Avoid people like this (even friends and family!).

 

Second, actively seek out supportive people who take the time to listen, just listen.  You need as large as possible a network of compassionate people around you.  Stop and think about this, you have many around you already.  They may be waiting in the wings, at a polite distance so as not to interfere or add to your stress.  If you think you can trust someone, ask them to be your friend.  You will be surprised at how many people are out there who have a loved one with a mental or emotional disorder, and how many are willing to help because they completely understand what you’re going through.

 

Third, politely and assertively say thanks but no thanks.  If judgmental people ask why you haven’t contacted them or returned calls, tell the truth, also without blame or judgment.  “Our situation is not good, but we are getting the best professional help, and we have been pulling back to take care of ourselves.  Thanks for showing interest, and thanks for your understanding and for giving us space.”  No apologies.

 

There is a curious phenomenon where craziness seems to attract “crazy” people.  You must block them from your life.  They might be obsessed with a religious, medical, or philosophical belief and want to make your child’s life their cause.  If this happens to you, don’t hesitate to end contact with anyone that wants to entangle themselves in your lives without your permission.  You are never responsible for meeting another’s needs or fitting their beliefs!

 

I once had a co-worker who had strong feelings about “natural” health care, who offered a steady stream of articles and comments about what could help my child.  I had to firmly insist that if she could find one piece of research proving that her preferred treatments helped even one person with schizophrenia, then I would listen.  This ended the unsolicited advice. 

 

Fourth, be prepared to grieve lost connections.

 

A single mother with a 16-year-old daughter sought help in a support group:  “Can someone help me?  I need someone to call my sister or mother and tell them that I and [my daughter] are not criminals or sickos.  They’ve stopped calling, they refuse to have us over or visit for Thanksgiving and Christmas, and I just want someone else to tell them that she’s fine now because she’s taking meds, and that her behavior is not her fault or my fault.”

 

Let go of those who blame, and move forward with your priorities.  Very often, they eventually turn around and make an effort to understand.  Many really do change and apologize for their insensitivity. I’ve experienced this and observed this, but it is not your job to make this happen.

 

Your criteria for friendship will change.  You will find out who your real friends are, and they may not be family members or current friends.  Real friends let you talk about feelings without judgment or advice, they are always around to listen, they help out with little things:  go out for coffee; call to check in on you; or watch your other kids in a crisis.  They may be people you never felt close to before but who have reached out to you with compassion.  Accept their help.  Don’t be too private or too proud to accept the offer of support.  Someday, after you have turned your family’s life around, find another family who needs your support.  Make a promise to help others in need, and to give back to the universe.

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Filed under bipolar disorder, borderline personality disorder, depression, mental illness, oppositional defiant disorder, parenting