Namiadvocate fall2015

Fall 2015

Success through Failure

Dr. Marsha Linehan Speaks About Her Visionary Therapy Inside: In a Mental Health Crisis, Do You Know What to Do? • Clubhouses: A Model of Success

• Mental Illness Awareness Week Oct. 4–10 • National Depression Screening Day Oct. 8 • NAMI Scientific Research Award Oct. 8 • World Mental Health Day Oct. 10 Millions of Americans live with mental health conditions, and advocates in communities across the country raise awareness about the issues.

Join us this year as we observe the 25th anniversary of Mental Illness Awareness Week.

Each year, we fight stigma, provide support, educate the public and advocate for equal care. Each year, the movement grows stronger.

nami.org/miaw

25 years

Contents Fall 2015 • Vol. 13, No. 2

The NAMI Advocate is published by NAMI, the National Alliance on Mental Illness.

3803 N. Fairfax Drive, Suite 100 Arlington, VA 22203-1701 Ph: 703-524-7600 • www.nami.org/advocate Executive Director Mary Giliberti Medical Director Ken Duckworth, M.D. National Communications Director Katrina Gay Communications Manager Brendan McLean Graphic Designer Cindy Stone Additional Copyediting Blackline Editorial NAMI HelpLine 800-950-6264 @NAMICommunicate www.facebook.com/NAMIofficial NAMICommunicate NAMI is the National Alliance on Mental Illness, the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by mental illness.

We get it. We’ve been there.

NAMI embraces people living with mental illness and their families who are often isolated. We offer understanding and support unique to those who are affected by these conditions.

NAMI means more than hope. We educate families and individuals and we advocate in every corner of the country to ensure better lives for everyone.

For information on submitting an article for publication visit www.nami.org/submissions. © 2015 by National Alliance on Mental Illness.

All rights reserved.

Editorial Note: Information provided in this publication is for informational purposes only and is not intended as medical advice. NAMI does not endorse any advertisements or advertising companies in this publication. Individuals and their family members should always consult with their own treatment providers about decisions concerning treatment and medications.

Some stock photos in this publication are being used for illustrative purposes only, and any person depicted in stock images is a model.

7 Putting a Plan in Place to Help Your Child Succeed at School 8 When You Are in Crisis, These Are the People Who Answer the Call 10 Helping Students Cope with the Pressures of College 12 After Decades of Life-changing Results, Clubhouses Get the Spotlight They Deserve 14 Goodbye, Breeze 16 In a Mental Health Crisis, Do You Know What to Do? 19 Calling 911 and Talking with Police 20 NAMI Honors Dr. Marsha Linehan, the Creator of Dialectical Behavior Therapy 22 A Houston Miracle Working with NAMI to Improve the Health Care Experience

24 Gorilla on Your Back 25 Finding a Piece of Sky in the Deepest Oceans An Interview with Author Neal Shusterman

Departments 2 Executive Director and NAMI President’s Letter 3 Affiliate Spotlight: NAMI Western Nevada 4 NAMI News 27 Book Film Art

Fall 2015 | NAMI ADVOCATE | 1

Our Colors Must Represent Who We Are

Compassion, Kindness and Perseverance

f you look at the new NAMI website or some of our publications, you will see the colors blue and green. This issue of the Advocate brought home to me that NAMI really is and must remain both blue and green.

Blue represents the blues—the hard struggle that dealing with mental illness often entails. In one article, a woman talks about her depression Mary Giliberti as a primate on her back — a spider monkey on a good day, and a gorilla on a bad one. In another article, a mother recounts the heartbreak of searching for her son who has gone missing.

As you read through these pages, you will see articles discussing how to cope with a crisis, what to tell the police to minimize the risk of injury to a person with mental illness and the responding officers, and what it is like to receive crisis calls on a suicide hotline. While we long for a day when the mental health system is not crisis-driven, NAMI members know all too well how very far we are from that reality.

There is hope, however. The color green represents growth and new possibilities. Kennneth Dudek, the president of Fountain House, explains how clubhouses provide a welcoming place for building relationships, getting work, and feeling a sense of belonging and friendship. Therapies provide skills to defeat the emotional dysregulation that often causes pain and poor outcomes for individuals and families. Dr. Marsha Linehan, our 2015 Scientific Research Award recipient, has saved and improved countless lives through her groundbreaking dialectical behavioral therapy (DBT).

Some within NAMI have experienced so much blue that they find it painful to even see any green in our materials or messaging. I get calls and emails from NAMI members who are concerned about our focus on recovery and hope because they have not seen it nor experienced it. We honor their struggles and understand that for some, resiliency is their current reality, not recovery.

Others have fought so hard for recovery that they balk at discussions of the darker side of mental illness. They feel that focusing on criminal justice, homelessness and other poor outcomes just feeds those negative perceptions. They worry that NAMI is so blue that it turns some people away, particularly youth and members of underserved populations.

None of us wants to live in a world where there is no hope and bleakness rules the day. At the same time, ignoring reality will not bring us the solutions that we need. We work hard to honor mental health struggles while also celebrating the victories. We are NAMI: multi-generational, multi-cultural, multi-experiential. How to best serve and galvanize our movement is not black and white; it is both blue and green.

n June, with great honor and humility, I began my term as president of the NAMI Board of Directors. I am looking forward to continuing my many years of volunteering for NAMI in this new role. As a past NAMI State Organization president, Affiliate president and NAMI Family-to-Family teacher, NAMI has been my home since the late 90s, when our son Marilyn Ricci became ill. Presently, as a support group leader, I continue to witness how important our work is for families and those living with a mental illness.

Lately, I find that people just do not want to hear about mental illness. If it remains “other,” then they can believe that mental illness will not affect them or their family. Mental illness is a subject that they do not want on their radar. Of course, we know that this ignorance of mental illness hurts those with an illness and their families, as well as those who suddenly find that they have an ill family member. An important part of our mission is to educate the community, even if they would like to avoid the subject. It is the only way that we can change the culture and be there for those who need us. No one should be alone when facing a mental illness.

Highlighting Mental Illness Awareness Week (Oct. 4-10) is an opportunity for us to engage the public and ensure that people get the help that they need. It is a constant battle to grab the attention of the community with a compassionate message regarding mental illness, but I know we can help bring about change.

During this week, we have the opportunity to highlight our concerns and honor all of us who fight for better outcomes for those living with a mental illness. In my town, we have joined forces with our local League of Women Voters, which has taken on mental illness as a study. They help extend our outreach to groups we don’t normally reach with our programs. It’s not a question; we need partners to fight stigma and to help us educate the public. Visit www.nami. org/miaw to find resources and ideas on how to engage your community.

Our illnesses are not popular, so we have to work harder to educate. I think it makes us some of the most compassionate and kind people, as our executive director, Mary Giliberti, said at the NAMI National Convention this past July. Thank you so much for all that you do.

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Mary Giliberti, J.D. NAMI Executive Director 2 | NAMI ADVOCATE | Fall 2015

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Marilyn Ricci President, NAMI Board of Directors

A f f i l i a t e

S p o t l i g h t

Rookie NAMI Affiliate Takes the Gold: NAMI Western Nevada

By Laura Greenstein, NAMI Communications Coordinator

Robin Reedy, president of NAMI Western Nevada, receiving the NAMI Affiliate of the Year award from Janet Edelman, First Vice President of the NAMI Board of Directors.

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ue to her mother’s mental health condition, Robin Reedy, president of NAMI Western Nevada, spent most of her life running away from anything that had to do with mental illness. She spent her childhood thinking that there were no options or hope for her situation. It wasn’t until much later in life that she even learned about NAMI and its efforts to help people like her and her mother. Realizing that “recovery is possible” has been the best thing about her experience with NAMI, she says, “Getting to see people recover, and learning that families affected by mental illness can have hope, for me, has been a revelation,” The brand-new NAMI Affiliate in Nevada is filled with motivated and passionate people like Reedy, who are all in some way affected by mental illness. As a result, NAMI Western Nevada won the NAMI Affiliate of the Year Award, which was presented at the recent 2015 NAMI National Convention — quite an accomplishment for only being in their very first year of official operation. All of the hard work and progress made by this group of people is done so voluntarily; there are no paid staff at NAMI Western Nevada.

Even though this NAMI Affiliate is relatively new, a lot of the members originally lived in other states and have years of previous experience working with NAMI. This has helped NAMI Western Nevada to adopt strategies from other NAMI State Organizations and Affiliates that work well.

One of their current goals is to reach 100 volunteers, which Reedy predicts will happen very shortly as the new Affiliate

continues to get its name out there. It recently held an event to raise awareness about NAMI at a legislative reception at the governor’s mansion. This event was familiar territory for Reedy; she had served as the governor’s chief of staff before becoming president of NAMI Western Nevada. The governor’s chief of staff and other staff attended the event, and they ultimately became members.

Reedy states that although the legislative reception was very well received, she anticipates an upcoming during Mental Illness Awareness Week event to be NAMI Western Nevada’s highlight of 2015: its first ever full-out fundraiser, which will be Cirque du Solei-themed.

Part of NAMI Western Nevada's plan is reaching out to the rural areas of Nevada. The board is extremely passionate in its efforts to grow the NAMI presence in Nevada and to help create more NAMI Affiliates within the state. It is also reaching out to the Spanish and Native American communities, and will soon hold its first Spanish-language education class.

If NAMI Western Nevada can put itself on the NAMI map less than a year, it is very exciting to see how it will progress in the future. While accepting the NAMI Affiliate of the Year award, Reedy posed the questions that accurately represent the limitless energy that has gone into making NAMI Western Nevada great: “If it’s not you, who? And if it’s not now, when?”

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N A M I

N E W S

AKA and NAMI Are Dancing in Step NAMI continues its partnership with Alpha Kappa Alpha Sorority, Inc. (AKA). One week after AKA had a strong presence at the NAMI National Convention, we returned the courtesy by participating in AKA’s Leadership Seminar in Chicago. AKA and NAMI members — including NAMI Executive Director Mary Giliberti — line-danced for hours to raise mental health awareness and decrease stigma. Mary also spoke at a wellness panel, and AKA distributed thousands of NAMI materials among its members.

NAMIWalks: Lucky Number 13 More than 400 NAMI Affiliates are joining together to make NAMIWalks’ 13th year its most successful yet. The spring season has already set records, and the fall walks are underway! This year, there will be more than 80 walks and 200,000 participants taking steps together to raise awareness for mental health in their communities and to provide hope to individuals and families affected by mental illness. Go to www.namiwalks.org to find the walk nearest you and to see who else will be walking to make a difference.

Here Is How You Can Fight Mental Health Stigma Every day, NAMI fights misconceptions and stereotypes about mental health conditions. For the 25th anniversary of Mental Illness Awareness Week, make a difference by pledging to be stigma free.

Your pledge is a commitment to: • Educate yourself on mental illness.

• See the person, not the illness.

• Take action against stigma.

Sign the pledge at www.nami.org/stigmafree.

Together, we can stop stigma from being a barrier against people speaking up and getting help.

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N A M I

N E W S

Capturing the NAMI National Convention If you’ve ever been at a NAMI National Convention, you’ve probably seen him. Even if you haven’t, but have been part of NAMI in the past 15 years, you’ve seen his work. Who’s this mystery person? It’s Mike Ciesielski. We’d like to give a special shout-out to our wonderful photographer, who’s volunteered his time and traveled around the country meeting NAMI members and friends, and helped us remember all of the wonderful things taking place each year at the convention. Here are a few of the great photos Mike captured at this year’s convention. To see more, go to www.flickr.com/namiphotos. See you next year in Denver!

NOTE TO SELF why i should stay positive… you never know what will happen tomorrow. you are not put on this earth for others, you are put here for yourself to enjoy art, your passion, so don’t worry what others do. your world is your world regardless of others.

Speaking to Congress About the Benefits of Early Intervention On Oct. 20, NAMI is sponsoring a congressional briefing on first-episode psychosis programs and the NIMH RAISE study. This briefing will educate Congress about the promise of these programs as a way to engage young people early, enabling them to continue with their life goals and prevent the negative consequences that often occur when people don’t get treatment, services and supports in a timely manner. Follow NAMI on social media, and check our website for more on the conversation. To learn more about these exciting programs, visit www.nami.org/firstepisode.

OK2Talk.org is a place for teens and young adults to talk about what they're experiencing by sharing their personal stories.

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Putting a Plan in Place to Help Your Child Succeed at School

By Jacob Bradshaw, NAMI Intern

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chool is where most children spend the majority of their time during the day. Their experiences at school can play a major role in their development. It's important that these experiences are as positive and helpful as possible. A child with a mental health condition may have additional obstacles at school, and as a parent, you play a critical role in your child's education. There are laws in place, including the Individuals with Disabilities Education Act (IDEA), that not only protect the rights of children with disabilities, but also give parents the right to oversee how the school handles their child’s education. These are called “procedural safeguards.”

Your rights as a parent include (but are not limited to): • An explanation of these rights and the way to make a formal complaint.

• Participation in meetings about the special educational needs of your child.

• Confidentiality and access to the educational records of your child.

• The right to grant or deny consent for many actions that a school can take for your child.

• The use of IDEA dispute-resolution procedures, and the right of appeal.

• The right to disagree and challenge the decisions of the school.

• An independent educational evaluation (IEE) for your child.

• The right to be notified in writing before a school takes certain actions related to your child’s education.

Either a school official or a parent may request an independent educational evaluation (IEE), but parental consent is always required for an evaluation to occur. The school then conducts the evaluation at no cost to you.

You have the right to have an IEE of your child done by an outside professional. The school must consider this in any decision about an individualized education plan (IEP), but it does not have to adopt the recommendations. IEPs are only required for public schools, but many private schools also offer IEPs or similar procedures.

When a child between the ages of 3 and 21 receives special education services, IDEA requires that the school work with the parents and children to develop an IEP. Through an IEP, students may be provided with special education services, curriculum or assignment modifications, or accommodations.

Some examples of accommodations include (but are not limited to): • Alternative assignments.

• Shorter papers or tests (or more time to complete tests).

• A different or adjusted curriculum.

• An atypical grading system.

• Having instructions read aloud.

• Ability to record lessons.

• Use of a calculator or other technology.

• Working in a quiet room away from noise or distraction.

• Extra break periods.

• Sitting at the front of the classroom.

Creating a Plan for Success While knowing your rights can help ensure that your child is treated fairly by his or her school, occasionally additional resources are needed to help your child succeed. IDEA includes more than 13 categories of disability, including mental health conditions, which determine whether your child can receive special education services. However, just because a child has learning and attention issues doesn’t mean that he or she is eligible for services. In order to receive education services, the student must be evaluated.

The goal is to find a balance between giving your child the tools to succeed without providing them with an unfair advantage. Having too few accommodations can leave a child frustrated and affect his or her learning and development. Too many accommodations can leave a child poorly prepared for their post-IEP life.

If you don’t believe that your child needs an IEP, or you have not qualified your child as a student with a disability under IDEA, you may request a 504 plan.

A 504 plan can be helpful when more substantial interventions are not needed.

In most cases, 504 plans do not allow for a change in curriculum, and they cannot place children in special education classrooms. They can provide certain services, such as counseling, speech therapy or other general services.

If your child qualifies, a 504 plan must be provided for free.

Who Develops the IEP? As a parent, you have the right to invite anyone involved in your child’s care to the IEP meeting to be part of the team.

At a minimum, your child’s IEP team will include: • The child’s legal guardian(s).

• At least one general education teacher.

• A special education teacher.

• A special school district representative.

• A school psychologist or other professional in the field of psychology.

• In certain cases, your child.

You should also bring someone with you to IEP meetings to help support you, such as the child’s case manager, therapist, psychiatrist or psychologist, or someone they recommend.

There must be one IEP team meeting each year to review the plan. Through these meetings, the IEP adapts as the child progresses through school. Each child must have a new IEP at least every three years.

Moving Toward Independence An IEP must also include a “transition plan” for when a child turns 16 years old, but it's often a good idea to start earlier. This plan provides a framework for preparing your child for adult life. It is more than just about school; it covers job and daily life skills, as well. It’s important that your child be included in creating this plan.

Knowing your rights for how to help your child succeed in school, and implementing services that can help him or her learn in the most effective way possible, can help prepare your child for success beyond the classroom.

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When You Are in Crisis, These Are the People Who Answer the Call

By Brendan McLean, NAMI Communications Manager

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here are many numbers that people mention when they talk about suicide.

10. Suicide is the 10th leading cause of death in the U.S. 13. The number of minutes that pass before another person loses his or her life to suicide.

22. The number of veterans who die by suicide every day.

34,000. The number of people who die by suicide each year.

There is also the number 1-800-273-8255. It is the number for the National Suicide Prevention Lifeline. It’s a number that you can call 24 hours a day, 7 days a week. It’s a number that you can call when you feel like you don’t have anywhere to turn.

The National Suicide Prevention Lifeline is a network of 166 crisis centers in 49 states that connects individuals to crisis services in their local areas. Last year, the network answered 1.3 million calls.

I sat down and spoke with two former suicide hotline volunteers, Kate and Christina, to see what it was like responding to calls.

Brendan: Why did you first get involved in volunteering at a crisis line?

Christina: I first got involved in volunteering at a crisis line because I wanted to be a support to those who needed someone to talk to. I have struggled with depression and anxiety my entire life, and it is encouraging to know that there is a resource out there whose purpose is to help someone in their darkest moments.

Kate: I decided that it would be a good way to help out while also gaining some experience in the mental health field. I was excited to be there for someone who may not have anyone.

Brendan: Tell me about the training process. What was it like?

Kate: Training involved three months of classes that meet twice a week. The most helpful part of training was the countless roleplays in every class. We would act out calls in front of small groups and then debrief. When you’re taking crisis calls, you’re not just passively listening to the caller’s problems. It’s all about active listening. You learn to reflect feelings, summarize issues, ask open-ended questions and use “I” statements to convey concern. For example, “You’re feeling really hopeless and alone right now. I’m concerned for your safety. How would you feel if I sent you some help?”

Risk Factors for Suicide Research has found that about 90% of individuals who die by suicide experience mental illness. A number of other things may put a person at risk of suicide, including: • A family history of suicide.

• Substance abuse. Drugs and alcohol can result in mental highs and lows that exacerbate suicidal thoughts.

• Intoxication. More than one in three people who die from suicide are found to be currently under the influence.

• Access to firearms.

• A serious or chronic medical illness.

• Gender. Although more women than men attempt suicide, men are four times more likely to die by suicide.

• A history of trauma or abuse.

• Prolonged stress.

• Isolation.

• Age. People under age 24 or above age 65 are at a higher risk for suicide.

• A recent tragedy or loss.

• Agitation and sleep deprivation.

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Brendan: What did you enjoy most about coming in to your shift each time?

Christina: The variety of calls that we received and establishing rapport with the callers. As a listener, I had a very short window to establish rapport with the caller, and because the nature of these calls is so sensitive, quickly establishing trust is vital to the success of the call.

Brendan: What did you enjoy the least?

Christina: I understand the nature of the crisis hotline, and that is to provide immediate support to de-escalate the caller so that he or she can help themselves, but not always knowing what happened to the caller after hanging up was difficult.

Kate: The hardest part is not always having that follow-up conversation. Sometimes callers would agree to a follow-up call the next day so that we could check in and see how they were feeling. Most of the time, however, we would never know the full story.

Brendan: Working at a crisis hotline sounds like it might be pretty stressful. How did you handle the tense situations?

Christina: Once I built up my confidence that I could actually do this, my overall stress levels subsided, and I felt it somewhat comforting to know that I could be there for someone when they may feel like they have nowhere else to turn. I think it’s easy for all of us to put self-care on the back burner, but especially as a “caregiver,” it’s extremely important to find the time and compassion to do whatever needs to be done to feel good and keep the body and mind calm.

Kate: You learn to leave your calls at the door. If you go home and re-play conversations over and over in your head, you’re going to get burned out. After you take calls for a while, you kind of learn to detach yourself and not get too emotionally invested.

You do everything you can for that caller, and you have to trust that you’ve given them help to the best of your ability.

Brendan: Are there any calls that you still remember?

Christina: There are definitely some calls and incidences that I will never forget, mainly those involving physical abuse, children, depression and suicide. I spent over 300 hours on the crisis hotline and talked with hundreds of callers. Working on the hotline definitely changed me. It made me realize how human we all are, with so many of us struggling with similar issues and illnesses, and that we do not have to be alone in our journeys.

Kate: A call that I remember was from a young man in the middle of nowhere Virginia. He was walking along the road and telling me about how he was thinking about suicide and mentioned that there were a lot of bridges around. After it became clear that suicide was an imminent threat, I told him that I was worried about him and wanted to send him some help. He agreed. I stayed on the line while my shift partner scrambled to look up the name of the obscure bridge he was standing on. My shift partner got on the phone with the police in his town and tried to describe to the operator what the caller looked like and where he could possibly be. It took about an hour, but we were able to direct the police to his exact location and get him the help that he needed.

Brendan: What kept you coming back each week to volunteer?

Christina: When someone is in crisis, most times they just need to feel like they are being heard. I feel that life is hard, and it is important that people have an outlet and to know that someone is there to listen to them during any hour of the day, with compassion and free of judgment. Also, I was fortunate to work with some really great people. We supported the callers, but we also supported one another.

Kate: Most of us have been affected by mental health or suicide in one way or another, whether personally or in connection with a family member or friend. Either way, we feel a connection to these callers. What kept me coming back every week was the hope that I would be able to make some small difference in these people’s lives. Suicide is a scary thing to talk about, but being able to talk to someone anonymously and without judgment can make all the difference.

Know the Warning Signs of Suicide • Threats or comments about killing themselves, also known as suicidal ideation, can begin with seemingly harmless thoughts like “I wish I wasn’t here” but can become more overt and dangerous • Increased alcohol and drug use • Aggressive behavior • Social withdrawal from friends, family and the community • Dramatic mood swings • Talking, writing or thinking about death • Impulsive or reckless behavior • Putting their affairs in order and giving away their possessions • A person who has previously expressed thoughts of suicide may seem calm or even upbeat For more information on suicide visit www.nami.org/suicide.

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Helping Students Cope with the Pressures of College

By Laura Greenstein, NAMI Communications Coordinator

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he college lifestyle is not always supportive to those facing mental health struggles, either prior or newly developed. A new environment, social and academic pressures, and easier access to drugs and alcohol are just some of the challenges that students face.

Consequently, students often feel alone or do not have the proper supports.

One of the most devastating outcomes that can result from a lack of support is suicide. More than 1,000 suicides occur on college campuses every year, rendering it the second-leading cause of death among college students. The National Survey of College Counseling Centers conducted by the American College Counseling Association (ACCA) has found that almost every director of college mental health centers has reported an increase in the number of students with serious mental health conditions.

In another report, The American Freshman: National Norms for the Fall of 2014, the Higher Education Research Institute, the nation’s largest and oldest organization for the empirical study of higher education, discovered that students’ self-rated emotional health rating has dropped to 50.7%, its lowest level ever.

Where Schools Are Coming Up Short There is a multitude of reasons why it appears schools are not meeting the needs of students. With more students attending college with mental health conditions — in part due to better treatments, and more support at home, resources on campus are being stretched thin. The college-age years are also a time when many mental health conditions first manifest. And at times, some schools are so worried about their reputations that they encourage or force students with mental health conditions to leave.

“Schools should encourage students to seek treatment. But a lot of policies I see involve excessive use of discipline and involuntary leaves of absence, and they discourage students from asking for the help they need,” said Karen Bower, a private attorney who specializes in disability discrimination cases in higher education, in a Newsweek interview this February.

This confluence of factors making it hard for students to stay in school means students are not only losing their chance at an education, but also potentially their friends, community, or any type of support system they have at school.

“A depressive episode made it impossible for me to go to classes, and I did not get help until it was too late and

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I was withdrawn and I could never afford the cost to go back because I lost my scholarship for being withdrawn,” a respondent said in a 2012 survey conducted by NAMI. Statistics from that survey also revealed that 64% of dropouts in college were due to a mental health-related reason.

What Schools Are Doing Well In order to address the increase in mental health concerns among students, schools have responded by attempting to beef up their mental health services. They have been doing so by providing campus suicide prevention training, increasing the amount of time in training faculty to identify warning signs, providing skills training for clients to help them learn to tolerate and manage emotional discomfort, and increasing essential mental health services such as stress-reduction programs, medical leave policies, education programs, and on-site psychiatric services to prevent suicide.

When counseling centers are equipped, they work. In The National Survey of College Counseling Centers, a majority of students expressed that the counseling center at their school helped them remain enrolled and also helped with their academic performance.

Understandably, providing the support and treatment that students require is far from an easy task. Keeping up with the increasing demand for mental health services is a costly endeavor that requires proper funding and staff to accomplish.

A lot of schools are forming groups and clubs, such as NAMI on Campus, where students are be able to talk with one another and learn new things from each other in a supportive environment. This kind of interaction can help students living with a mental health condition feel less isolated, teach them new methods of coping and help them to build a network of support at school.

Improving the Ability of Students to Cope There are many ways that college students attempt to cope with the new stresses of their new environment. Some may binge drink, have unprotected sex or engage in self-harm.

These are destructive coping techniques, however, and will not ultimately help the student. A way to potentially instill better coping methods for students is by teaching aspects of wellresearched skills-based therapies. These skills teach students how to deal with stress, handle their emotions more effectively and engage in social relationships more successfully.

Some of these therapies that teach these skill-based skills include cognitive behavioral therapy (CBT), which focuses on

teaching people how to better control or change their thoughts and the resulting behavior. Mindfulness-based cognitive therapy (MBCT), another successful type of therapy, focuses on mindfulness and living in the present moment.

One of most well-researched examples of a skills-based therapy is dialectical behavior therapy (DBT). We’ve chosen to explore this therapy in part because Dr. Marsha Linehan is the recipient of the 2015 NAMI Scientific Research Award.

Read the interview of Dr. Linehan conducted by our medical director, Ken Duckworth, M.D., on page 20 to learn more about the creation of DBT. DBT is most often used to treat borderline personality disorder, but it can also be helpful for people living with other conditions who could benefit from learning positive coping strategies.

“The skills are what people talk about when they talk about DBT. The skills are the active ingredient in DBT,” says Dr. Linehan, the creator of DBT. “Many want these skills in schools, and some want them taught early. They are effective for managing life.”

The four skills of DBT are mindfulness (being present), distress tolerance (how to tolerate pain), interpersonal effectiveness (how to maintain self-respect while engaging in relationships with others) and emotion regulation (how to change or control your emotions).

“Prior to DBT, I didn’t feel like I was living. I was not mindful of what was going on around me, and I was terrified of meeting new people,” says Julia Lesmerises, a 21-year-old student at Southern New Hampshire University. Julia is living with bipolar disorder and has been in a DBT program for the past year. She had tried other treatments before beginning DBT, which were helpful, but she says they have been nowhere near as helpful as DBT has been. “I needed skills that help me cope integrated into my therapy, and regular therapy wasn’t enough,” she says.

There is precedent for using skills-based techniques in school-based settings. An article in the Wall Street Journal this past July featured junior high and high schools that have used skills from DBT to help students handle self-harm. One of those schools was Maple Grove in Battle Ground, Wash.

The school is currently testing a class for all students in grades 6 through 8 that uses these skills to create 50-minute lesson plans that can be taught by general-education teachers.

Vanessa Stein, a social work services specialist at the University of Central Florida, is a facilitator for a group that teaches these skills as a part of the school’s counseling center.

The group has been running for the past four semesters and has had four to eight clients in each group. “We feel very supported in running a skills-based therapy group on our campus and advertise with our student health partners and dean’s office case managers,” says Stein.

Stein has attended trainings, read books and collected resources online about skills-based therapies in order to acquire the necessary knowledge to facilitate the group.

“Personally, I love that DBT is skill-based and incorporates mindfulness and homework such as diary cards,” says Stein.

“I have seen clients come to understand themselves better and learn when to use skills to help them better regulate their emotions and reduce their impulsiveness.”

Skill-based therapy can be useful to an individual regardless of whether or not there has been a diagnosed mental illness. Getting these skills to a wider audience can help provide people the necessary tools to be able to handle their emotions, live in the present instead of in their heads, handle emotional pain, and not be afraid to engage in social relationships with others.

“We need to get [these skills] to people,” Dr. Linehan declares. “What good is a great treatment if you cannot get access to it? The skills should be everywhere.”

For students looking to improve their university's mental health services, NAMI's Advocacy for Positive Change can give you a guide. Follow this five-step process to make positive changes to your campus mental health services. Go to www.nami.org/advocacyforpositivechange for more information.

Evaluate.

What mental health services and supports exist on campus?

Before you start advocating, know what’s already there.

Be strategic.

Begin by identifying the services and supports on your campus that are working well, and build on this foundation. When developing your strategy, start considering small requests, then work toward broader change.

Find campus allies.

There are natural allies to partner with like other student clubs, faculty members, campus mental health professionals and administrators as you build a strong, unified voice and your advocacy goals.

Launch an advocacy campaign.

Work with your campus allies to develop your clear list of requests, determine who makes the decisions about mental health services and supports, schedule a meeting, and go to work. Tell other students on campus what you are asking for and what changes are being beingmade madebased basedonon your youradvocacy. advocacy.

If successful, remain involved through implementation.

Accountability matters, so stay involved to be sure that your school is doing what they said they would.

Fall 2015 | NAMI ADVOCATE | 11

After Decades of Life-changing Results, Clubhouses Get the Spotlight They Deserve

By Kenneth J. Dudek

L

ately, Fountain House and clubhouses modeled after it around the nation and the world have received significant recognition for their pioneering work in the treatment of serious mental illnesses.

E. Fuller Torrey’s latest book, American Psychosis, calls the clubhouse model “the best model,” citing its combination of access to supportive housing, vocational opportunities and socialization. In addition to Fountain House’s clubhouse in New York City, Torrey calls Genesis Club in Massachusetts, Independence House in St. Louis, Alliance House in Salt Lake City and Gateway House in South Carolina “outstanding.” I would add Club Cadillac in Michigan and Vincent House in Florida to the list as well.

Simply stated, clubhouses are community-based centers open to individuals with mental illness. Clubhouse members have the opportunity to gain skills, locate a job, find housing and pursue continuing education.

In 2014, the Conrad N. Hilton Foundation selected Fountain House/ Clubhouse International as the winner of the world’s largest and most prestigious humanitarian award, the Hilton Humanitarian Prize. This is the first time in the prize’s history that a mental health organization has been selected. Also in 2014, NAMI recognized Fountain House’s supported employment program as an evidenced-based model, and the New York Association of Psychiatric Rehabilitation Services (NYAPRS) presented Fountain House with the Marty Smith Memorial Award.

This recognition has positioned clubhouses at the center of an emerging global dialogue about mental health.

I would like to seize the momentum generated by this favorable attention to point out what I believe is truly at the core of our success: The clubhouse model is and always has been a partnership, originated and built by people with mental illness and their families and supporters.

Countless programs throughout the U.S. (including several of those mentioned 12 | NAMI ADVOCATE | Fall 2015

Fountain House member Vivian and her nephew, Greg.

by Torrey) and around the world were started by mothers, fathers, sisters and brothers, together with, and in support of, their loved ones living with mental illness.

These families have advocated tirelessly with local governments, leveraged personal and professional networks for funds and job opportunities, and undertaken myriad actions to ensure that their relatives with mental illness achieve their potential and live fulfilling and productive lives. For some, that has meant returning to school or work; for others, it has meant obtaining supportive housing and accessing comprehensive medical and psychiatric care; and for still others, it has meant having a community to which they belong.

I recently had the chance to speak with a group of members and their families at our clubhouse in New York City.

Karen spoke to me about her son Justin’s journey from diagnosis to joining Fountain House. “The best thing I ever did was take the NAMI Family-to-Family class at the National Alliance for Mental Illness,” she says. “It taught me to understand his symptoms and to realize when he was having an episode.” It was through NAMI that Karen heard about Fountain House.

“I knew Justin would be comfortable with the autonomy and sense of community of the clubhouse. People are different

whether or not they have mental illness.

Clubhouses understand those differences and work with members as individuals.”

I also spoke to Leslie about her son, another clubhouse member. “You beat yourself up a little when you have a kid with mental illness in a way a parent wouldn’t do if their kid had another illness, like juvenile diabetes. You think, ‘Well, if I hadn’t done this or if I had caught that….’ But in less than a year at Fountain House, my son has learned to manage his own medication, do chores, get around the city by himself and make some good friends. He wants to go to back to college. He is not only stabilized, but he is thriving.”

Another member, Betty, describes what she feels makes clubhouses so effective: “A good community not only makes you accountable, it also pushes and inspires you to fulfill your potential. At first, a ‘clubhouse for people with mental illness’ sounded like something out of a nightmare. It was quite the opposite. I found a professional work environment, where people go to happily volunteer their skills to learn, to heal and to prosper.”

Since becoming a member, Betty has reconnected with her family after years of absence. “My mom flew in to visit me, and I gave her a tour of the clubhouse.

When she met my worker and the fellow members, she thanked them for giving me back to her. She had thought I was lost forever — sealed away by this disease that rattled my brain.”

Fountain House is visited by mental health professionals and family members from all over the world. In the 1970s, it received a grant from the National Institute of Mental Health to formally train people to replicate and implement its approach.

Currently, there are more than 300 clubhouses in 30 states and 34 countries serving 100,000 people. To further disseminate the clubhouse model to the world, I co-wrote Fountain House: Creating Community in Mental Health Practice with our director of training and education, Dr. Alan Doyle, and psychotherapist Julius Lanoil. The book, published in 2013 and reviewed by experts including Oliver Sacks, M.D., recaps the history of its unique working communities.

In American Psychosis, Torrey writes, “Sixty years after clubhouses began, there should be 2,000 of them … and states should be opening additional ones, not closing them down.” But more empirical research on how we achieve such outcomes must be done to generate the kind of funding necessary to grow the clubhouse movement.

Over the years, academic researchers have intermittently attempted to measure the effectiveness of the Fountain House model, but for the most part, their studies have been inadequate in capturing the true impact of its work. Aside from recent recognition as an evidence-based program

by SAMHSA — not to be discounted as insignificant — little has been done to determine what really makes its community-based approach, which has

been developed by people with mental illness and their families, so successful.

There is hope on the horizon, however. Recently, Dr. Zachary Grinspan of Weill Cornell completed a study showing how members at the clubhouse in New York City are less likely to be admitted to the emergency department than non-members. Additionally, Fountain House has recently entered into a partnership with the World Health Organization and Columbia University’s Mailman School of Public Health to study early mortality among people living with mental illness. I am heartened that this research will establish best practices to extend and improve the quality of life for people with mental illness that can be implemented by governments and health care professionals around the world.

Still, more research needs to be done; in return, more funding for clubhouses will likely follow. Now that recent attention generated by Hilton, NAMI, SAMHSA and the World Health Organization has placed clubhouses in the spotlight, we implore academia to conduct independent studies of these programs around the country. I am certain that our members and their families would gladly volunteer to demonstrate the transformative power of what we have created together.

Kenneth J. Dudek is president of Fountain House. His career spans more than 25 years in community mental health. Under his leadership, Fountain House won the 2014 Conrad N. Hilton Humanitarian Prize, affirming the success of its recovery model and placing mental health on the global humanitarian agenda.

What to Look for in a Clubhouse • A robust and sustainable funding stream. Clubhouses with sufficient funding offer comprehensive programming and community-building activities.

• Professional staff. An effective staff member knows how to work side-by-side with members and empower them to run their clubhouse.

• Active and substantial membership. Look for a vibrant and diverse community.

• Open seven days a week from morning to late evening.

Social activities that take place outside of the workordered day are essential.

• A supported housing program.

40% of the homeless population lives with mental illness. Housing is essential to their stability and healing.

• Transitional and Supported Employment Programs. People with mental illness can and want to work. Partnerships with private employers who extend the opportunity to do so are invaluable.

• Supported education.

Members looking to do so should be encouraged to return to school and achieve their academic goals.

• Accreditation by Clubhouse International. Accreditation will ensure that a clubhouse is following the “standards” and that core values and programming are in place.

Go to www.iccd.org to view a list of accredited clubhouses.

Fountain House member Justin and his mom, Karen.

Fall 2015 | NAMI ADVOCATE | 13

Goodbye, Breeze

By Dixie Gamble

W

e decided to name him Garin, figuring that it would look good in lights someday.

Garin Gamble: simple, easy to remember and quite creative for a couple of 21-yearold kids from a small town. From the start, it was easy to see that he was destined for some kind of fame. He had the name, the edge, the sparkle and the brilliance.

When Garin was a year old, he managed to put together his first drum set by hitting pots and pans with spoons in synchronized timing. At the age of 11, he joined his first rock band. By the time he was 14, he was playing professionally.

After being the catalyst for getting his band recognition and deals, he was fired from the band. Drugs and alcohol were the obvious issue, or so we thought.

Just after Garin turned 27, my husband found him in the bathtub with a butcher knife to his throat. This crushing incident followed years of manic behavior that we attributed to drug use. As a trained psychotherapist, I should have been able to see his illness, but I didn't.

When the diagnosis finally came, it felt like a fist being driven deep into my gut. I remember falling to my knees on the kitchen floor, unable to breathe. All of my denial was quickly shattered when we took him to a psych unit and the intake psychiatrist asked him what month it was. He said December. It was August. Garin was diagnosed with bipolar disorder and schizoaffective disorder. He said that he heard voices. They called him Breeze.

I believed in miracles. I believed that I could save my boy.

I joined NAMI and became an advocate for those with mental illness, especially those on death row. I found Garin the best treatment center in the area and joined its board of directors.

I desperately fought his illness with every ounce of life force in me. When that was gone, I fought on with one foot in the grave.

Before Garin entered halfway living, he tried living several years in his own apartment, under the daily care of a mental health community outreach program. This ended with him being abducted by drug dealers, who held him hostage in his apartment, filling his raging need for a fix while holding a gun to his head for his disability check.

My husband and I have cleaned up filth and drug residue more times then we care to remember. Yet in spite of all that we did, and all that the frail, but good-hearted, community mental health services could do, Garin did not get better. Even when he was compliant on his medication, he was hospitalized about four times a year for being in a deep psychosis. During each hospitalization, we were told that his chances of “coming back” were growing slimmer. Still, I refused to surrender my hope.

14 | NAMI ADVOCATE | Fall 2015

Dixie Gamble and her son, Garin.

On a night in October 2004 following a medication change, Garin walked out of the halfway house where he had lived for two years. For six months, we didn’t know where he was, or even if he was alive. We filed a missing person report, which became part of a national database. Six months later, I got a call from an officer with the Santa Monica Police that Garin had been found. But because he had not committed a crime, the police could not hold him until I got to California.

Garin walked back into the night to his newfound world of street living and methamphetamine use.

Undaunted, I knew I would find him. A mother can find her child, even in the darkest of corners. I spotted him walking in a park by a pier. I took off running across the boulevard through thick traffic. Bearded, deeply etched and browned by outdoor living, he was dragging a blanket as he purposefully headed toward the beach. When I saw the tattoo on his left leg, though, I screamed, “Garin!” He turned, and I saw a slight spark leap from his eye, then he exclaimed, “Mom, you found me!”

Garin spent three weeks in serious condition in the intensive care ward of UCLA Psych Hospital. His boyish good looks were covered in layers of moment-to-moment survival.

Even after a week of showers, I could still smell the street on him. He showed no emotion toward me and seemed more bemused than anything else by his ordeal. He made it clear to his doctors that he would never go back to Tennessee. He said that he was on his “walkabout” to find his freedom.

Even though he seemed to be returning to some reality by the middle of his third week in the hospital, I clearly saw signs that street living had seduced him into a world that I struggled to comprehend. Perhaps for him, it was a world where the vastness of the Pacific acted as a filter for the massive amounts of input assaulting his brain.

In one of our few conversations, I had to laugh when I asked him if he realized we were looking for him all those months.

“I saw my picture on the bulletin board of the Community Center when I would go in for a hamburger,” he said flatly.

“What did you think when you saw it?” I asked. “I thought I wanted a hamburger,” he deadpanned.

Since he could only be discharged to a designated care facility, I found him yet another halfway house, this one managed by two men who nine years before had been living on the street with bipolar disorder and meth addiction problems. My hope soared.

When I left Garin at the house a couple of hours before my flight home, he walked me to the car. Lightly touching my arm, he showed a hint of emotion. “Mom, you’ve done it all. You found me, you got me help and a place to live, you’ve done it all, Mom.” I boarded the plane wrapped in a thin veil of hope. By this time, I knew to never entertain anything near an expectation.

By midnight the next night, Garin was back on the street.

I returned to Santa Monica a month later, with no resolve other than to get identification somewhere on his person so that when he is unable to speak for himself he would not become a John Doe. I never found Garin again. After two weeks of constant searching, I filed a “critical missing” person report. It’s been three months, and nothing has happened.

He has disappeared. I have no way of knowing if he is still breathing, but I know that I will never see the vibrant person I know to be my son again. He may still walk the earth, but it is in silence.

His last words clearly told me that I had “done it all.” Yet, in claiming his own sense of freedom, as distorted as we might judge his choice to be, Garin has given me freedom. He has been my greatest teacher. Somehow, somewhere, we chose to walk this tragic path together, and now we have come to an end. I have no way of knowing if this is the end, but I hope for a miracle.

Why do I choose to tell this story? I tell this story because the next time you see a dirty, ragged, homeless person, chattering randomly to no one, I want you to pause. Look at that person, and remember this story. That person is someone’s son, brother, father or uncle. Somewhere out there, someone misses and loves that person without condition.

A Miracle Comes!

I wrote Garin’s story in October 2006. On a Saturday afternoon in January 2007, my cellphone rang. It was a number I didn’t recognize.

“Mom, it’s Garin. I’m done with my walkabout, and I’m ready to come home. Will you help me come home?”

Garin was in San Diego, having ridden a bicycle from Venice Beach through the desert! He survived the insurmountable and unsurvivable, and borrowed a cell phone from a stranger in a moment of lucidity to call me.

Garin has since been living independently and has had no hospitalizations since May 2007.

What to Do if a Loved One Is Missing 1. Contact your local police immediately of your missing loved one and provide them with all the information you can. If the person remains missing more than three days, ask the police to place them on the FBI’s National Computer (NCIC) list as an “endangered adult.” This computer network provides information nationwide. If you make it clear to police that it is a mental health issue, they may be able to reduce the number of days. The network will give you a police number to use when searching for your relative. Make sure to keep a record of the report with the case number so you can follow up.

2. Reach out to the person's friends and acquaintances. Call other people who are close to your loved one and ask when they last saw him or her. Also call anyone who had regular or recent contact with the missing person, such as case managers, coworkers, doctors and neighbors.

3. Register your loved with the National Missing and Unidentified Persons System (NamUs).

NamUs (www.findthemissing.org) lets you upload information about a missing person for use by law enforcement officials, agencies and the public.

4. Check nearby facilities including hospitals, churches, homeless shelters and libraries. Keep in mind that hospitals are not required to let you know who is a patient.

5. Post a one-page flyer that includes a picture of the missing person, along with his or her vital statistics including age, height, weight, hair color, eye color, clothes last seen wearing and last known location.

6. Use social media. Check his or her Facebook, Twitter, Instagram and other accounts. There may be clues that can point you to where your family member is. Look at the missing person's friends' accounts as well. Reddit also has a public forum (www.reddit.com/r/missingpersons) where you can post information about your loved one.

7. Alert the local media. The person may see the announcement and decide to return home.

Others will look out for the missing person as well. With media involved, local police may devote more resources to solving the case.

Go to www.nami.org/missing for more information on mental illness and homelessness.

Fall 2015 | NAMI ADVOCATE | 15

In a Mental Health Crisis, Do You Know What to Do?

By Brendan McLean, NAMI Communications Manager

Y

ou are in the middle of a mental health crisis. You or someone you love may be thinking of suicide or making an attempt. Maybe the crisis involves hearing voices, paranoia, confusion, panic or substance use. Someone may have been physically threatened or assaulted.

What should you do? Should your first call be to 911, the doctor or family?

Where can you get help? Knowing how to respond effectively can preserve safety and make sure the person in crisis gets help.

Be Prepared (if Possible) No one wants to be in a mental health crisis, but if you or a loved one is at risk, it is best to prepare by creating a network of support, developing a crisis action plan and learning about services available in your area. Thorough preparation increases the chances of a good outcome in the event of a crisis.

If you have a mental health condition, you should work with your treating practitioners so that you can anticipate potential places or times that you may have difficulty and set up a plan of action for these times. Establish whether you should call your doctor, your therapist or one of the resources below or seek help in person. Research shows that in some conditions like bipolar disorder, there are certain predictable patterns that often precede a crisis. Try to learn what these patterns are to identify when a crisis may be coming.

A Wellness Recovery Action Plan (WRAP) is one option that works for many people. It teaches them how 16 | NAMI ADVOCATE | Fall 2015

to plan for overall care, and how to avoid a crisis. For more information on WRAP, visit www.mentalhealthrecovery. com. Regardless of whether you develop a formal plan, it is helpful to develop a plan that everyone agrees to.

If you know you might experience a crisis, you may also want to ask about a Psychiatric Advance Directive (PAD).

It is a legal document that allows a second party to act on a person’s behalf to secure treatment during an acute episode of mental illness should your ability to think clearly become difficult. The PAD details preferences for treatment and how to manage responsibilities until you are able to resume control.

Create a Network of Support When the going gets tough, the support of friends, family or support groups can be lifesaving, but it is wise to give guidance on how potential supporters can help you. Think of two to four people who may comfort and encourage you in a time of need. Ask them if they would be willing to be part of your network of support. If they agree, help them understand what you would like them to do. Give them a copy of the crisis plan, and discuss the role they can play.

It can also be helpful to call the NAMI HelpLine, your local NAMI Affiliate, or a “warm line” with trained volunteers who can offer empathy and support. However, not all communities have a warm line. To see if one is in your area, dial 211, or go to www.211. info for information on local social services. Remember to try and find out if one exists before a crisis occurs.

What’s In My Crisis Plan?

After a second hospitalization when I was 23 years old, I wanted to find a way to avoid another relapse. Creating a good crisis plan is all about connecting with people, sharing experiences and finding out what works. Here are some things that help me plan for and deal with a mental health crisis.

Self-awareness Knowing my own symptoms and stressors gives me the power to do something about them. This includes monitoring intense moods and thoughts.

Helping Hands Having people in my life that care about me and notice when I am out of balance is helpful.

Coping Skills New skills that I’ve learned from others with similar experiences, by attending NAMI support groups has been a key to my success in recovery.

Good Communication with My Doctor Being able to work with my doctor to adjust my medications keeps me stable, especially when my symptoms are bad.

Have a Schedule and Structure Creating a schedule for the day keeps my mind from going to dark places.

Doing something I enjoy, like painting, brings me back to myself.

Know Important Phone Numbers I have the suicide hotline, my doctor, my parents and crisis intervention team contact information.

— Leonardo Marcono

This number should be a part of your plan. Be mindful that these sources are usually staffed with peers, family members and other volunteers who are not professional crisis counselors.

If you are a family member and a crisis plan has not been implemented, you can still gather information that will be helpful if a crisis occurs. However, this plan should not be created during a crisis. Wait until the dust settles, when you and they can more calmly discuss how to work together to help things go better should another crisis occur in the future. Be sure to include the following information: • Phone numbers for therapists, psychiatrists and other health care providers.

• Written consent permitting the primary support person to communicate with mental health professionals, if the person so chooses. Agency-specific consent forms will likely be required.

• The primary supporter’s name, contact information and relationship to the person.

• Phone numbers of family members or friends who would be helpful in a crisis.

• A local crisis line number (you can usually find this by contacting your NAMI Affiliate, or by doing an Internet search for “mental health crisis services” and the name of your county).

• Mobile Crisis Unit phone number in the area (if there is one) • Address of walk-in crisis centers, if available in your area, or emergency rooms • The National Suicide Prevention Lifeline: 1-800-273-TALK (8255) • The person’s diagnosis and medications • Previous crises such as psychoses, suicide attempts or drug use • Triggers that upset the person to the point of crisis (situations or behaviors such as crowded places, loud voices or people getting too close).

• Actions, people or resources that have helped in the past • Determine whether police officers in the community have Crisis Intervention Training (CIT). If so, note that a CIT officer should be requested when calling 911 or the police.

How to Get Help or Help in a Mental Health Crisis It can be frightening and intimidating when you or a loved one is in the midst of a crisis.

If you are in a crisis, the first thing you should do is evaluate the situation.

Ask yourself, What is the nature of my crisis? Is this something that requires treatment urgently? If you have developed a plan to kill yourself, that’s an immediate mental health crisis, and you should go to a hospital emergency room or call 911.

If you’re not sure whether it’s urgent, ask yourself if you have already thought about what method you would use. If you’ve thought about where, how or when you would take your life, that means you’ve begun developing a plan.

If you’re still hesitating, ask a friend or family member to stay with you while you are at risk. Call the National Suicide Prevention Hotline at 1-800-237-8255 as soon as possible. They have trained counselors available to speak with you 24/7 and assist in a crisis situation.

And get in touch with your treatment providers. Tell professionals and the people around you what's going on, and get their advice.

However, if it is your loved one in a crisis, keep calm and listen with an open mind and a caring heart. Note the emotions expressed through their words and actions. Do not argue or give advice.

Instead, simply reflect what you hear and see back in your own words, and then invite the person to tell you more.

Ask open-ended questions beginning with how or what, such as, “How do you feel now?” or “What happened next?”

The person will start to feel heard and is likely to calm down.

If the person poses an immediate risk of harm to self or others, call 911 or call their psychiatrist, therapist or case manager. If possible, connect the professional directly with the person.

If the person will not speak with him or her, the mental health professional may not be able to acknowledge that the person is under their care, but you still have the right to say what you feel the professional should know.

If you sense someone is at risk of harming self or others, this is how you should respond: • Remove the means of physical harm, such as guns, knives or stockpiled pills.

• If there are multiple people on the scene, have one person speak at a time. Ask all but those who are immediately involved to depart. In an urgent crisis, it is best to have at least two supporters, one to stay with the person and the other to call for help.

• If you worry that the person may strike you, stay at least an arm’s length away and a little to the side.

• Don’t argue, threaten or raise your voice.

• Ask what you can do to help.

• Talk openly and honestly about suicide. Don’t be afraid to ask questions such as, “Are you having thoughts of suicide?” or “Do you have a plan for how you would kill yourself?” If the person remains suicidal, call 911.

• Don’t debate whether suicide is right or wrong.

• If the person asks for something, provide it, as long as the request is safe and reasonable.

• If you are nervous, try not to fidget or pace.

• If the person is having hallucinations or delusions, be gentle and sympathetic, but do not get into an argument about whether the delusions or hallucinations are real.

Where to Get Support and Treatment During a Crisis Mental health crisis response services are a vital part of any mental health service system. However, the services available will vary depending on where you live.

To find out what is offered near you, call 211, your local NAMI Affiliate or your state mental health authority, or visit the online SAMHSA treatment locator at www.findtreatment.samhsa.gov.

The following are components of an effective mental health crisis response system: 24-hour Crisis Lines Crisis lines are often the first point of contact for a person in crisis or her loved one. Telephone crisis services provide assessment, screening, triage, preliminary counseling, and information and referral services. Some communities may have crisis lines available, but not for 24 hours. The National Suicide Prevention Lifeline’s phone number is 1-800-273-TALK (8255).

Fall 2015 | NAMI ADVOCATE | 17

Walk-in Crisis Services Clinics or psychiatric urgent care centers can offer immediate attention.

They focus on resolving the crisis in a less-intensive setting than a hospital, although they may recommend hospitalization when appropriate. Walkin clinics may also serve as drop-off centers for law enforcement to reduce unnecessary arrests.

stabilize the person and get him back into the community quickly.

Mobile Crisis Teams Mobile crisis teams intervene wherever the crisis is occurring, often working closely with police, crisis hotlines and hospital emergency personnel. Mobile teams may provide pre-screening assessments or act as gatekeepers for inpatient hospitalization, and can also connect an individual with communitybased programs and other services.

Hospitalization There may be times when a person is admitted to the hospital for intensive treatment. Private psychiatric hospitals, general hospitals with a psychiatric floor are designed to be safe settings for intensive mental health treatment.

This can involve observation, diagnosis, changing or adjusting medications, ECT treatments, stabilization, correcting a harmful living situation, etc.

If your loved one and his or her doctor agree that inpatient treatment is a good idea, he or she will be admitted on a voluntary basis. Some private hospitals will only take people who voluntarily accept treatment.

If a person is very ill and refuses to go to the hospital or accept treatment, involuntary hospitalization may be a last resort. The legal standard for an involuntary hospitalization varies by state, but typically requires some form of being considered a “danger to self or others.�

It is crucial to create a discharge plan before a person leaves the hospital, to help prevent this situation from happening again. Knowing why this happened can help prevent similar situations in the future. Family members should be involved in discharge planning if the person is returning home or if he will need support. A good discharge plan ensures continuous, coordinated treatment and a smooth return to the community.

Respite Care and Residential Services Crisis respite and residential services can help a person stabilize, resolve problems and connect with possible sources of ongoing support. Services that may be provided include physical and psychiatric assessment, daily living skills training, social activities, counseling, treatment planning and connecting to services.

Crisis respite services are also beneficial because they can provide short-term relief to individuals who are caring for family members who might need more support outside of the home.

Crisis Stabilization Units Crisis Stabilization Units (CSU) are small inpatient facilities of less than 16 beds for people in mental health crises whose needs cannot be met safely in residential service settings. CSUs may be designed to admit on a voluntary or involuntary basis when the person needs a safe, secure environment that is lessrestrictive than a hospital. CSUs try to

18 | NAMI ADVOCATE | Fall 2015

Extended Observation Units (23-Hour Beds) Extended observation units (EOUs), also known as 23-hour beds, can be a stand-alone service or embedded within a CSU. Admission to an EOU is appropriate when the crisis can be resolved in less than 24 hours.

Partial Hospitalization or Day Hospitalization Partial hospitalization provides care and monitoring for a person who may be having acute psychotic symptoms without being a danger to self or others.

It allows the person to return home at night and is much less disruptive. It can also be used as a transition from inpatient hospital care before a complete return home.

Emergency Rooms When it isn’t possible to get treatment from a mental health center or private doctor, or if a situation escalates into an emergency and safety is a concern, a visit to an emergency room might be the only option, and police may need to help get your loved one there. In many communities, emergency rooms are the only option.

A person can expect to be registered after arriving at the emergency room.

This will involve paperwork and answering questions about insurance and medical history. A psychiatric examination will determine a plan of action based on the clinical situation and risks.

Preparation Is Key No one wants to be in a mental health crisis, but being prepared and knowing what to do will increase the chances of a positive outcome. Developing a crisis plan for yourself, or with someone you love, openly discussing the warning signs and agreeing on the role each person can play could mean the difference between life and death.

Calling 911 and Talking with Police

By Laura Usher, NAMI CIT Program Manager

T

he thought of needing to call police for help can make an upsetting situation sound even more frightening, but it is sometimes necessary if a situation escalates into a crisis. In the event that you need to call the authorities, there are a few things you can do to keep the situation as calm as possible.

What to Do When You Call Share all the information you can with your 911 operator. Tell the dispatcher that your loved one is having a mental health crisis and explain her mental health history and/or diagnosis. If the police who arrive aren’t aware that a mental health crisis is occurring, they cannot handle the situation appropriately. Many communities have crisis intervention team (CIT) programs that train police officers to handle and respond safely to psychiatric crisis calls. Not every police officer is trained in a CIT program, but you should ask for a CIT officer whenever possible.

What to Do When the Police Arrive Police are trained to maintain control and ensure safety. If you are worried about a police officer overreacting, the best way to ensure a safe outcome is to stay calm.

When an officer arrives at your home, be sure to say, “This is a mental health crisis.”

Mention any helpful information, then step out of the way. Yelling or getting too close to the officer is likely to make him feel out of control. You want the officer to be as calm as possible.

Be aware that your loved one may be placed in handcuffs and transported in the back of a police car. This can be extremely upsetting to witness, so be prepared.

What Are Police Allowed to Do? Laws are not the same in every state, so you’ll want to talk with local law enforcement, but there are some things that police can help you with in most places: • Transporting a person who wants to go to the hospital. A well-trained CIT officer can often talk to a person who is upset, calm him down and convince him to go to the hospital voluntarily.

• Taking a person to a hospital for an involuntary evaluation. In certain circumstances, police can force a person in crisis to go to the hospital involuntarily for a mental health evaluation. The laws vary from state to state.

• Checking on the welfare of your family member if you are worried about her or can’t reach her. Call the non-emergency number for the police department in your community and explain why you are concerned. Ask them to conduct a welfare check.

Your 911 Checklist Have this list on hand when you dial 911 so that you can follow these suggested guidelines. Give the dispatcher the following information:

your name address that law enforcement should come to any weapons that are present the name of your loved one age height and weight clothing description diagnosis (if there has been one) drug use (current or past) medication (on or off) prior violent behavior past psychosis details about past delusions or hallucinations triggers things that have helped in the past

Remember: You are asking unknown professionals to come to your home to help you resolve a crisis. They will have NO information about the situation unless you inform them.

If you have questions about the laws in your state, talk to your local police department or contact your local NAMI Affiliate (go to www.nami.org/local to find the Affiliate nearest you).

Fall 2015 | NAMI ADVOCATE | 19

NAMI Honors Dr. Marsha Linehan, The Creator of Dialectical Behavior Therapy

By Ken Duckworth, M.D., NAMI Medical Director

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n Oct. 8, NAMI will honor Marsha M. Linehan, Ph.D., ABPP, with its annual Scientific Research Award event in Washington, D.C. Dr. Linehan is professor of psychology and of psychiatry and behavioral sciences, and is founder and director of the Behavioral Research and Therapy Clinics, at the University of Washington, where her primary research is in the development and evaluation of evidencebased treatments for high-suicide-risk, multi-diagnostic and difficult-to-treat populations with serious mental health conditions. She is also the creator of dialectical behavior therapy (DBT), a well-researched skills-based treatment to help suicidal and drug-dependent individuals who live with borderline personality disorder and other related disorders.

I spoke with Dr. Linehan about the development of dialectical behavior therapy, what makes DBT special, and how her dog Toby has worked himself into her busy schedule.

Congratulations on being NAMI’s 2015 Scientific Research Award winner!

Thank you! To get it from such an important group that truly understands the field of serious mental disorders and what stigma means is really a great honor.

How did you first get interested in research?

As an undergrad, I thought that researchers were a bunch of cold people, 20 | NAMI ADVOCATE | Fall 2015

and I didn’t want to be like that. Then in a psychology class, we were told that we were supposed to conduct a research study. I was in shock: We can do that?

OK, I had an idea for a study about groups of people not being good at being able to evaluate things, and that this could be the root of prejudice.

I went from class to class testing my idea and showed that if you changed the race of the person being evaluated, you got different answers. I had a professor who believed in me — and all the other students. Doing more studies just continued to reinforce the positive experience. I decided cold and inhuman people didn’t run science after all.

What was the process that led you to conceptualize your signature treatment, dialectical behavior therapy (DBT)?

This is a perfect example of success through failure. I was a believer like you cannot believe in traditional BT [behavioral therapy]. Early in my career, when I was an assistant professor at the University of Washington, I got an NIMH grant and was going to test whether BT was effective for suicidal people. I had done suicide research, and I believed in BT and that it would work; it never occurred to me that it wouldn’t.

I worried that people in the treatment-as-usual part of the study would also get better in a randomized controlled trial. So I recruited highly suicidal difficult-to-treat people, as I wanted to show that my treatment was better than treatment as usual. If

it wasn’t, what was the point of a new treatment?

But when I started the treatment, I blew it; it was a disaster. I hadn’t heard of borderline personality disorder at the time I developed the treatment. But if that first treatment had worked, not one person would know my name.

So behavioral therapy wasn’t working alone. How did you add some of the other key ideas in what is now DBT? I tried BT alone, but people then asked, “Are you saying I am the problem? Are you blaming me?” “NO, NO, NO,” I said.

So I decided to try an unconditionalacceptance approach. That failed, too. I realized I had to bring together acceptance and change at the same time, and both practice and teach radical acceptance of the past and of the present moment. The problem was I didn’t know how to practice or teach that. I knew it was a key, and I didn’t have it. So I took a leave and went to learn acceptance at an abbey and with a Zen master.

After I got that understanding and both practiced and taught it, the treatment then worked.

That’s a remarkable journey. Can you break down the root of some key DBT skills?

I read every article that I could on BT, and to be honest, I get a lot more credit than I should for DBT. At least 50% of the skills I developed came from me reading treatment manuals. For example, I took elements from treatment for anxiety, which is an exposure treatment; people

want to avoid what threatens them. If you want to get over a fear, you have to check the facts, and if it is not really dangerous, you have to stop avoiding it. This is the skill of opposite action.

The mindfulness skills came from Zen and contemplative prayer. I tried to translate what my teachers taught me.

For example, learn to observe the present moment. Then learn to describe what you observe. If you didn’t observe it, you can’t describe it. This is important, because we often tell others what their motives or feelings are when of course we can’t observe either one.

How is acceptance working in practice in therapy?

One way is to learn that this one moment is enough; don’t add on the suffering of the past and the suffering of the future.

The suffering of the present is enough.

It’s the only thing that exists. I find that teenagers in particular love the skill I call “radical acceptance.” You suffer less if you just radically accept the reality, whatever it is. With that skill, you can then focus your energy on what needs to happen.

What is the hardest DBT skill to learn?

Becoming nonjudgmental is very hard for many, because people think that if you stop judging others, you are approving.

That isn’t true. You just need to observe and not go right into judgment.

Is there a role for medications in concert with DBT for some people, in your opinion?

This is what DBT says about meds: One, be sure your prescriber does not give you lethal doses of medications. Two, almost everybody is overmedicated, so see if you can get your provider to taper your medications down or off, if possible.

The idea here is to replace pills with skills. Three, if you meet the criteria for a diagnosis where it is clear from research that you need to take a medication that has been tested and approved, take it as prescribed and don’t make changes without contacting your prescriber.

Four, a DBT therapist does not make medication decisions unless they are an MD or a nurse practitioner.

How can parents best support their children who live with borderline personality disorder? Do they need to learn skills also?

In DBT, parents and adolescents go to skills training together. They learn the same skills, practice the same skills and have the same homework. Adolescents call their therapist for skills coaching, and parents call one of the group leaders.

Does DBT work for other problems like addiction?

Yes, we have good data on that. When treating heroin addicts, I developed a new set of addiction skills. For example, with the skill of dialectical abstinence, you have to both commit to absolute abstinence, and you have to have a relapse-prevention plan for use if you fall of the wagon. It’s the “dialectic” in “dialectical behavior therapy.” “Dialect” means the synthesis of two opposing sides.

There has been discussion of changing the name of borderline personality disorder.

Where do you stand on the issue?

I think it’s one of the worst names ever. It is degrading to be told there is something wrong with your personality, with who you are. The disorder itself is a pervasive emotion dysregulation disorder across the spectrum of emotions. That is what this is. That is what it should be called.

It is through skills that they learn that emotions need to be regulated and how to do so.

If a person needs to find a DBT therapist, how should they go about finding one?

First, a DBT therapist should be part of a team. If he or she is not on a team, then that person is not a DBT therapist.

Ask them what their training is in DBT and who trained them. Ask if they get any supervision on their work. The Linehan Institute keeps a list of people who are trained by us. There are other good trainers, but in this field what is sorely needed is one standard national certification. We are in the process of finalizing the development of such a certification. We simply don’t have enough people trained. If you cannot find one or the waiting list is six months, I

think a good practitioner in BT may be able to do it — if they are part of a team.

Can you tell us about your family? How did you balance your career with your home life?

My daughter Geraldine is Peruvian, and she came to live with me when she was 16.

A temporary visit led to the last 22 years together. I live with her, her husband and now my famously beautiful and brilliant 2-and-a-half-year-old granddaughter. I have the family I always wanted.

You have been a great friend to NAMI. Tell us about your experience with being part of the NAMI family.

My goddaughter has schizophrenia, and I was her out-of-town caretaker and advisor. She went to NAMI-sponsored events, and they had a huge positive impact on her. She loved those groups.

So I love NAMI. You were featured in the New York Times for your own recovery journey. What was it like for you to become so public?

A patient once said to me, “Are you like us?” I asked, “Do you mean, have I suffered?” She said, “No, I mean, are you really like us?” I then realized that I was a coward. I wanted to say something about my life; I mean I have made it out of hell.

I often think if I can make it, then you can make it. I then decided I don’t want to be a coward, so I am going to write something about my experience.

I called Ben Carey, a writer at the New York Times, and said that I needed a writer who will write something that no one will read. He replied, “How is page one of the New York Times?” What choice did I have? I didn’t want all this publicity; I just wanted to be less of a coward, but now it’s out there.

Lastly, do you have pets in your home? If so, can you share a story?

Of course. I have a dog named Toby Choclo. I didn’t know how much you could love a dog until I had one. He’s part of my routine. He is best friends with my granddaughter, who is a toddler.

They chase each other all day long. It’s wonderful.

Fall 2015 | NAMI ADVOCATE | 21

A Houston Miracle

Working with NAMI to Improve the Health Care Experience

By Margaret Gallagher, RN, Ph.D., Brenda LaVar, Ph.D., Jane Mahoney, RN, Ph.D. and Cynthia Mulder, L.C.S.W.

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rofessionals may sprint, but patients and families run a marathon. That’s how one leading international psychiatrist now understands the differences in how mental health affects professionals vs. the individuals and their family members who live with it every day.

His understanding developed after witnessing the NAMI Provider Education program in action at The Menninger Clinic in Houston. Mental illness has a traumatic impact on the lives of individuals living with it, as well as on their families. Living with a mental health condition involves learning how to manage the burden of trauma and simultaneously navigate complicated service systems to ensure recovery.

Health care providers can have a significant impact on individuals and their families. The NAMI Provider Education program aims to introduce mental health professionals to the unique perspectives of people living with mental illness in order to help health care providers strengthen their capacity for providing competent care.

The NAMI Provider Education teaching team consists of a person living with a mental health condition, one of his or her family members, and a mental health professional who has also been personally affected by mental illness.

Forming the Partnership NAMI State Organizations and Affiliates across the country have experienced difficulty getting the course into health care organizations because of the requirement that staff participate in all five sessions. Also, there is limited awareness 22 | NAMI ADVOCATE | Fall 2015

of the program among provider agencies and groups. However, NAMI Greater Houston and The Menninger Clinic recently overcame these obstacles and have already seen outstanding outcomes. It was the support provided by NAMI Greater Houston, Correct Care Recovery Solutions, LLC and The Menninger Clinic that made participation in this presentation possible.

The Menninger Clinic developed a patient-centered caring model that seeks to provide the best care to people receiving treatment in variety of ways, including competencies titled Delivering Customer Service, Understanding Illness Experience and Providing Trauma-Informed Care.

Dr. Susan Hardesty, senior vice president and medical director at The Menninger Clinic and a recipient of the NAMI Exemplary Psychiatrist Award, as well as a leader of the planning committee, recommended the NAMI Provider Education program as the training segment for the clinic’s Understanding Illness Experience session after recognizing how closely aligned the missions of the two organizations are.

Dr. Hardesty first came across the NAMI Provider Education course in South Carolina and continues to be one of its foremost champions. She witnessed a positive and transformative change in the attitude of staff toward people with mental illness and their families after participating in the program, so she wanted to bring the results to the Menninger staff.

After receiving support from Dr. Jane Mahoney, director of nursing practice and research at the clinic, she was able to do so. A generous grant from the Arthur Vining Davis Foundations provided the opportunity to develop the clinic’s patient-

The Menninger Clinic developed a patientcentered caring model that seeks to provide the best care to people receiving treatment in variety of ways...

centered caring model. Menninger then approached NAMI Greater Houston to set the stage and obtain the needed NAMI Provider Education teaching teams.

NAMI Provider Education introduces mental health professionals to the unique perspectives of individuals living with mental illness and their families. It works to develop enhanced empathy for their daily challenges and recognize the importance of including them in all aspects of the treatment process.

NAMI Provider Education is a free, 15-hour program of in-service training taught by a team consisting of an adult with mental illness, a family member and a mental health professional.

What You’ll Gain • An understanding of the realities of living with mental illness • Increased compassion for the vulnerabilities that people face when seeking care • Recognition of your critical role in the individual and family’s journey toward recovery • An empowered view of the lasting impact your care makes For more information on the NAMI Provider Education program, visit www.nami. org/provider or email namieducation@nami.org.

Benefits of Collaboration Bringing this class to Menninger has benefited everyone involved: the NAMI Affiliate, the teaching team, the provider agency, the class participants, the people living with mental health conditions, their families and society at large. NAMI Greater Houston now has additional opportunities, such as hopefully partnering with Menninger in the future, for individuals and family members to participate in personal advocacy on the road to recovery. One of the members of the teaching group said that their experience was the most rewarding experience that they have had with NAMI, and that it helped them realize that each mental health professional actually brought a unique perspective to the situation.

The Menninger Clinic credits the program with helping staff members learn to listen together, develop a shared understanding of the lived experiences of those living with mental illness, and increase their involvement with the community and the local NAMI Affiliate.

The benefit most frequently cited by Menninger Clinic staff was “being able to hear testimonials of people living with mental illness and family members— while neither of them was in a crisis.”

Generally, health care professionals tend to only encounter patients and their families in crisis situations, so it was a welcome change for them to listen to and learn from the personal narratives of persons affected by mental health conditions.

The professional staff participants reported becoming more appreciative of just how disruptive symptoms can be to everyday life and the value of empathic and compassionate health care providers. Staff realized that treatment was only part of the illness experience and began to grasp the profound courage that ill individuals and their families muster every day. Staff also discovered that the goals of family members and

professionals are not always the same, but that sharing these experiences has the power to improve their ability to collaborate with one another.

While further research is ongoing at Menninger and will culminate in a published article on the caring project, more work is needed to ensure consistent outcomes and the reliability of the program. Initial results of the process evaluation are informing future decisions on which courses to offer. However, the ratings on the NAMI course evaluation tool support the value of the program to all participants, and the comments have encouraged Menninger to move forward with more teacher training and NAMI Provider Education courses.

Future Plans After a successful beginning to the partnership, NAMI Greater Houston has received interest from others in the community, and it is set to begin a Provider Education course at a local clubhouse for both mental health professionals and peer staff members.

A group of three hospitals, including a hospital in an adjacent county, the Mental Health and Mental Retardation Authority (MHMRA) of Harris County and NAMI Greater Houston, are in the early planning stages for the NAMI Provider Education Course.

Interest is growing among other groups in the area, and inquiries are coming in from a variety of sources.

A local Community Action Agency, the Texas Department of Family and Protective Services and a police division have all expressed interest. These organizations believe that NAMI Provider Education is essential to improving the manner in which their staff interfaces with members of the community who are affected by mental health conditions.

Looking back on the experience, leaders of the NAMI/Menninger partnership believe that its level of success was due in large part to the passion and leadership of the organizers.

These qualities of the teaching team members are characteristic of NAMI members. This level of dedication is what ultimately makes the program and NAMI a success.

Fall 2015 | NAMI ADVOCATE | 23

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Gorilla on Your Back

By Lisa Schleicher

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epression can be a gorilla on your back, but every day presents a different primate to deal with. The goal in living with depression is to have a spider monkey. Spider monkeys are tiny little fellows. They cling pretty tightly, and can certainly get in the way, but hey, you can manage a spider monkey. You can put a leash on it, you can walk around with it on your shoulder and it might require some attention, but you can breathe, you can think, and for a while, you might even forget it is there. A spider monkey isn’t perfect, but it’s reasonable.

Some days, you have a monkey on your back. This guy is bigger than the spider monkey. He is probably still controllable, but he’s certainly more of a problem. He is going to steal your food, so you won’t eat much. He is going to distract you so that you can’t focus on what’s in front of you, and he’s going to trip you up, but you can probably work around him with some extra effort.

Orangutans are harder. They are big, heavy, and have really long arms that reach around and cause trouble. They push away things that give you joy, make it hard for other people to get near you, weigh you down. They will literally cause you physical pain and block your ability to see a path to relief. If you live with depression, you develop the strength to carry around an orangutan, but you are aware of its presence 100 percent of the time. It impacts the way you eat, sleep, play, work, and interact with friends and family. Having an orangutan on your back is a huge, heavy weight to bear.

Then there is the gorilla. Imagine how hard it would be to get out of bed with a gorilla on your back. Think about how difficult it would be to get dressed,

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to brush your teeth, to go to work and to do your job with the crushing weight of a gorilla on your back. Imagine the pain — both physical and emotional — that the gorilla is going to cause. Try to breathe or eat or think; the effort is exhausting.

Now, live with your primate of the day when no one else knows it’s there.

They can’t see the monkey, orangutan or gorilla, and you can’t make them believe it’s there. They want you to shake it off, ignore it and think about something else. They haven’t lived with a monkey on their backs, and they cannot begin to understand how overwhelming life is with a monkey.

Those of us living with clinical depression are given tools to help control and tame our beasts — such as medications, therapy and exercise — but some days, those are not enough. If we aren’t using all of the available tools, finding the strength and energy to pick them up is sometimes more than we can do, because simply being is an exercise in emotional and physical endurance.

So, how do you help someone like me live with a monkey on his or her back?

One, don’t be judgmental. Trust me, no one wants to live like this. No one would choose to deal with this. It might look like we are not doing what we need to or that we are wallowing in the pain.

But from where we sit, we don’t see any way out. We are too busy just trying to breathe.

Two, respect it. While you may never be able to fully empathize, respect that this is a very real pain, in every sense of the word. We know that what we are feeling may not be logical, may not be reality, but that doesn’t change how it feels — and it feels lousy.

Three, offer the help that you can. Be a friend, show the love. Don’t walk away

or get angry; that just feeds the monkey.

Ask (gently) if we have taken our meds, help us make a doctor’s appointment, or come by and just spend time, even if we can’t tell you we want you to. Listen to us, let us cry, and encourage us to not check out from the world. And know that sometimes we are doing all of the things we are supposed to be doing — and yet King Kong is moving in. It is just like that sometimes.

Finally, watch for cries for help.

I am blessed; my family and friends know that when I have a gorilla, I need support. And thanks to this analogy, I am able to tell them how I feel with just a few words, instead of trying to explain how the day is going. I have a monkey; I have an orangutan; I have a gorilla.

The gorillas are real.

Go to www.nami.org/notalone to share your story or to read other's stories.

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Finding a Piece of Sky in the Deepest Oceans

By Brendan McLean, NAMI Communications Manager

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eal Shusterman is a New York Times bestselling author of young adult fiction. With most writers, some of their own lives ultimately end up in their pages. But in Shusterman’s latest book, it may be more than usual. Challenger Deep is the story of Caden Bosch, a brilliant high school student; it’s also the story of Caden Bosch, who is on a pirate ship headed for the deepest point on earth: Challenger Deep, the southern part of the Marianas Trench.

Chapters alternate between these two realities until they ultimately begin to crash together as Caden’s world becomes more and more confused.

As Caden emerges from his fog and begins to distinguish between what is real and what is not, it becomes clear that the characters aboard the ship have real-world counterparts in the hospital that Caden has been admitted to.

Challenger Deep is based on the real-life experiences that Neal Shusterman and his family encountered when his son, Brendan, first began to experience the symptoms of a mental illness.

Working closely with his son to create this work — Brendan’s illustrations can also be found throughout the book — Shusterman has created a beautiful and heartfelt portrayal of a young man losing touch with the world around him.

I was fortunate enough to be able to speak with Neal Shusterman about his book and why he decided to write a young adult novel with mental health as its central theme.

Where did the idea to first write a young adult novel with a central character affected by mental illness come from and why did you feel it was necessary to tell this story?

When my son was 16, he was diagnosed with schizoaffective disorder. His break left him unable to differentiate between what was real and what was in his head. He was hospitalized, and when he was in the absolute depths of his illness, he said to me, “Dad, it feels like I’m at the bottom of the ocean screaming at the top of my lungs and no one can hear me.”

As an author, I’m always looking for meaningful stories —

and at that moment, I knew I had to write about that feeling.

Challenger Deep is the deepest place in the world — the very bottom of the Marianas Trench. I felt it was the perfect metaphor for the depths of mental illness. I couldn’t tell the story right away, though — we were in the depths with Brendan, too close to be able to look at it with any perspective.

About seven years later, when he was really beginning to thrive, and had the illness under control, I asked him if I could tell a story about a teen going through what he went through.

Now he’s 26, finishing up his college degree, and you’d never know he’s struggled with mental illness. There is a lot of despair when dealing with mental illness, but there is also a great deal of hope. Our story is one of hope. I wouldn’t say it’s a “happy ending,” because that’s too simplistic. Life goes on — there will be ups and downs — but right now things are good, and hopefully they’ll stay that way!

Your son’s artwork is included throughout the book. Was the writing process for this book different from others that you’ve written, and how was it working on a project with your son?

The process for writing this book was like nothing else I’ve ever written. The story takes place in two realities — Caden, the main character, is on a surreal voyage across the sea, and that’s juxtaposed against a psychotic episode in his real life.

The artwork came first; it was created while Brendan was in the depths of his illness, and the images inspired a lot of the things that happen on the voyage. My editor at HarperCollins agreed that some of the artwork should be included in the book. I think it adds a powerful dimension. Also, Brendan read early drafts of the book, and helped me to shape it. His input made all the difference.

There are some passages in the book that I believe accurately convey what others going through similar experiences might feel (“I wish I’d lived in an age before technology. I would much rather everyone think I was a prophet than some poor sick kid.”

“I don’t know which is more horrifying — the thought of being here for another week, or the thought that maybe the medication

Fall 2015 | NAMI ADVOCATE | 25

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that I so despise might actually be working.”) How did you go about doing research to write the book, and how did you incorporate your and your son’s own experiences?

When your child has a mental illness, you become an expert — or at least an expert in your own child’s version of it. Everything came from personal experience: things our family pondered, things my son said. I spent years trying to empathize and understand what he was going through. I have a degree in psychology—but that isn’t much help when you’re in the trenches with someone you love. Nothing qualifies you for writing about mental illness like being close to someone who struggles with it — and my goal was to find a way to express what it truly feels like to be in that place. I didn’t want to tell a story “about” mental illness; I wanted to take the reader through their own episode of psychosis, to give readers a glimpse of what it’s really like.

There are also points throughout the book that bring a certain levity to some situations, such as when he asks his mother to account for inflation when she asks for a penny for his thoughts.

For a topic as potentially somber and devastating as mental illness, why did you choose to include these moments?

Life, even in its most serious and somber moments, is never humorless — and those brief moments of levity help us get through the most difficult times. I remember this one time, when my son was still experiencing severe delusions. He had just gotten out of the hospital. The whole family was in the car. Out of nowhere he heaved a heavy sigh, and said “Somewhere in the world, someone’s head just exploded.” A beat of silence, and we all just burst out laughing — even him.

Stephen Hawking once said, “Life would be tragic if it weren’t funny.” I think we have to celebrate that whenever we can.

You describe the unease, but relative acceptance, at which Caden’s parents and sister come to understand his new situation.

I see their story in stark contrast to Hal’s new potential stepfather. What was this experience like for you and your family, and what helped you overcome the challenges that you faced?

While Caden’s family is not our family, I modeled the dynamic after us. In so many stories about mental illness, the parents are either clueless or in denial — which does happen at times, but I feel it’s a very one-dimensional way to look at a family dynamic. Caden’s family is never in denial, but struggles with that awful sense of helplessness of not being able to “fix” the problem. On the other hand, Hal’s mother and new stepfather represent the opposite extreme. They represent the parents who distance themselves as much as possible, as a means of self-preservation. Sadly, that happens, too. You either go to the depths with your child, or you sail away and save yourself.

In the acknowledgements, you mention what a great support and resource NAMI has been for you. How did you first find NAMI, and how has it helped you and your family?

It was Brendan’s incredible psychiatrist, Dr. Robert Woods, who suggested NAMI to us, and we attended many support group meetings. NAMI made a huge difference in all of our lives. When someone in your family has a mental illness, you tend to feel isolated, and you don’t know where to turn for

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support. NAMI was there to show us that we weren’t alone.

Brendan has been selling prints of his artwork, both at book festivals and online — and he’s resolved to give 50% of the proceeds to NAMI as a way of giving back. Anyone interested can find his artwork on my website www.storyman.com.

Neal Shusterman with his son, Brendan.

Some of Brendan's artwork.

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Behind the Wall: The True Story of Mental Illness as Told by Parents

By Mary Widdifield and Elin Widdifield Langdon Street Press (2015)

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ith Behind the Wall, sisters Mary and Elin Widdifield have crafted an book that has the makings of a classic. It contains stories of parents struggling with the challenges posed by children living with mental illness. Their stories are presented without reservation, with triumphs and tragedy, pain, grief, hope and defeat all laid bare. They are stories told not by the authors but by the parents themselves, carefully interviewed over several months.

The reader feels as though they are sitting in the interview locations as a silent observer to the struggles and hopes of the storytellers.

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The words of the parents are vivid and uncompromising.

Sometimes, they are horrifying: There is violence, death, substance abuse, psychosis, divorce, denial, poverty and crime.

But at the same time, there is also treatment, happiness, relief, families reunited and tragedies averted. Despair and elation are but a hair’s breadth apart.

Behind the Wall may not be an easy or fun read, but it is enthralling and deeply moving, and is sure to hold meaning for anyone who reads it. The parents in their stories provide examples of mistakes and successes, regrets, and moments of pride. There are also additional chapters offering further thoughts on dealing with grief and feelings of guilt, and advice on caregiving and coping with challenges.

Elin Widdifield, whose son lives with bipolar disorder, consolidates the book lessons drawn from the stories into “eight bits of advice”: • Be honest with yourself and your child • Trust your gut • Don’t be ashamed about a mental illness diagnosis • Be informed • Allow time and space for grieving • Find a method for coping that best fits you and your family • Don’t blame yourself or anyone else • Stay connected The final chapter of the book is not the final chapter of the people whose stories it tells, and the parents maintain hope for their children and a belief in the possibility of recovery. They speak of dreams and expectations that are different from what they once were, but that are far from shattered.

—Jacob Bradshaw, NAMI Intern

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www.nimh.nih.gov/JoinAStudy Fall 2015 | NAMI ADVOCATE | 27

B O O K

F I L M

A R T

The Teacher’s Guide to Student Mental Health

By William Dikel, M.D. W.W. Norton and Company (2014)

F

or educational professionals seeking advice and direction on how to support students with mental health conditions, The Teacher’s Guide to Student Mental Health is a great resource. The guide has a bit of a textbook feel to it, but the writing is clear and accessible, and colorful “vignettes” provide miniature case studies.

Author William Dikel, M.D., discusses the concept of the clinical-behavioral spectrum, a straightforward framework for understanding the relationship between mental health and behavior, and differentiating between willful, controlled behavior and that which is a direct result of mental illness.

On the clinical end of the spectrum are actions that derive directly from a mental health condition. For example, if a child has major depressive disorder and does not interact with other students, his or her behavior is likely a result (at least partially) of depression. Trying to coax him or her into not being “shy” wouldn’t be an effective solution.

The behavioral end of the spectrum might include a child who frequently throws tantrums but doesn’t otherwise exhibit signs of a mental health condition. Dr. Dikel explains that in these types of cases, psychiatric treatment is not needed; rather, behavioral intervention (such as disciplinary techniques) is called for.

28 | NAMI ADVOCATE | Fall 2015

For many individuals, some of their actions may be partly clinical and partly behavioral, or some of their actions may be entirely clinical and other actions entirely behavioral. Dr. Dikel stresses that it is important to not make assumptions about the cause of certain difficulties without considering both clinical and behavioral factors.

The next section of the book is a thorough look at various mental health concerns common among youth, including diagnostic criteria, symptoms and available treatments. The list is not exhaustive, but as an introduction to the field it is quite complete and covers all of the major focuses of adolescent mental health.

Dr. Dikel then moves into the heart of the book: a guide to working with students who have mental health conditions.

He examines teaching strategies, accommodations and specialeducation programs in relation to different mental health conditions. This includes descriptions of various school officials and mental health professionals and their potential role in the education mental health system. The book also includes advice and information on effective communication strategies between parents and school staff, 504 and specialeducation plans, and even the potential value of technology in working with students who have mental illness.

Appendices include a detailed explanation of comprehensive mental health evaluations, information on various therapy methods for adolescents, and a discussion on the appropriate use of medication, in particular for children.

Dr. Dikel warns against prescribing medication for symptoms that result from environmental factors — for example, a child with abusive parents is likely to be unhappy and stressed — or that result from physical conditions such as malnutrition, but supports the use of medication in many other situations while also endorsing non-medicinal therapy.

The Teacher’s Guide is an overall excellent and well-written resource. Certain sections could be expanded a little more; for example, some of the vignettes end in a series of questions without a complementary list of answers, and sometimes Dr. Dikel mentions situations where parents and the school may disagree, but doesn’t provide advice on how to resolve such a dispute. Nevertheless, as an entry-level text, The Teacher’s Guide covers what it needs to cover, and it does so in a very readable manner.

—Jacob Bradshaw, NAMI Intern

Fall 2015 | NAMI ADVOCATE | 29

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