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  • Mental Illness: Not a 'Thing'

    Mental Illness: That “thing” that no one sees.

    Mental Illness: That “thing” that no one sees … until it manifests itself because you choose not to understand or truly deal with what it is.

    Mental Illness: That “thing” that people think is “difficult” or “a choice” to act in a certain way, when in reality it’s the polar opposite.

    Mental Illness: That “thing” that prevents you at times from responding as you “should” (i.e. with kindness and tolerance.)

    Mental Illness: That “thing” that no one understands.

    Mental Illness: That “thing.”

    STOP calling mental illness “that thing.”

    May is Mental Health Awareness Month. We have to speak up and educate others about #mentalillness #nostigma

  • 'Perpetual Mental Battle'

    Sometimes your children do things that make you swell with pride, with the realization that these humans you’ve known since they were in the womb have become mature, thoughtful and caring adults.

    This is an example of that.

    Emma graduates at the end of April from Point Park, finishing in three years (plus some summer work) with a double major in dance as well as sports and entertainment management. She submitted a concept to PPU's dance club and was chosen to choreograph it, on top of her already full course load.

    The project, which she titled “Perpetual Mental Battle,” was inspired by Emma’s sister Kate, who struggled with bipolar throughout childhood and adolescence. Emma, in her description of the dance, admits that she “never really understood” what Kate goes through and notes the disorder is “often misinterpreted by others in society as well.”

    “I created this work aiming to physicalize the feelings and emotions experienced by someone with bipolar when they are going through a manic- depressive episode,” Emma writes. “It is simply meant to shed light on the internal conflict occurring that others never see, and usually fail to address in an appropriate and healthy way.”

    In developing the dance, Emma talked to Kate frequently to “ensure it was an accurate representation of her personal experiences.”

    “This piece is very timely for Kate's journey as she is finally in a mentally stable place,” Emma writes. “She has a wonderful job working at a preschool and is thriving in other aspects of life. She has become one of my biggest supporters, and I only hope to be able to provide her with the same love and support.”

    Wow. Just wow.

    Thanks to the dancers who did such a lovely job of performing Emma’s piece on Saturday night at PPU, including two (Lauren Michaels and Kyra Smith) who she has known forever from her days at MSA. The other dancers are Mariah Barajas, Hanna Eidson and Sara Ekern.

  • Random Acts of Kindness #2: Fire Away

    I recoiled the first time I saw the video of Chris Stapleton’s “Fire Away.”

    One of the best songs off of one of the best albums I’ve heard in years, the video tells the story of a couple who becomes entangled in the throes of the woman’s mental illness. It ends, as do too many of these stories, tragically, leaving the survivors to cope with unspeakable grief.

    “The song is about loving someone unconditionally through not so easy times. The concept of the video came to me as that would be the hardest possible space in which to love somebody,” Stapleton says in an interview on the Campaign to Change Direction website.

    Stapleton’s debut album, “Traveller,” has sold more than 1.5 million copies in the U.S. It won two Grammys and drew attention for its mix of old-school country and Southern rock. The video for “Fire Away” has been viewed almost 15 million times, creating awareness around an issue — mental illness — that is too rarely mentioned or not seen at all.

    Until it’s too late.

    ••••••

    I’m a lucky man.

    I’ve known two people — one a close friend; the other the daughter of family friends — who have died by suicide. I have a daughter who is ADHD/bipolar and struggles to maintain her equilibrium at times. An uncle and an aunt also have suffered from severe mental illness.

    Their experiences have helped shape me as a person and as a father. I feel fortunate to have known these people, and lucky to have a daughter as kind at heart as Kate is. And I’m committed to sharing our family’s struggles in an effort to draw some attention to mental health issues. 

    Hearing that Stapleton would be performing in D.C., I noted the show was scheduled during an intense period of travel and was unsure if I could make it on a Sunday night after returning from a second trip to Pittsburgh in two weeks. Then, when I went to buy a ticket, all that was left was a single seat in the upper nosebleed section.

    Jill had a dinner to attend that night, so she told me to go ahead. The cause is the right one, and that’s what’s most important.

    The Campaign to Change Direction is a national initiative designed “change the culture of mental health in America.” Its goal is to get people to learn and share the five signs of emotional suffering — change in personality; agitation; withdrawal; decline in personal care; and hopelessness — so that we can prevent tragedies and help others to heal.

    When Stapleton had the idea for the video, he didn’t work with a specific charity on mental health issues. Actor Ben Foster, who is in the video, suggested the campaign, which has received the support of Prince William, First Lady Michelle Obama, and actor Richard Gere, among others.

    Stapleton agreed to work with the organization, although he had no idea about the video’s potential impact on his audience. He also had to get his record company to buy into the project, noting that label executives “looked at me like I had three heads” when he told them the idea.

    “I didn’t want to be in the video. I wanted to make it with these actors because it felt more artful and meaningful,” Stapleton says. “It was just a notion, but then we made it and it became real and useful and something that hopefully can make the world a better place. … That notion became a good thing.”

    ••••••

    The DAR Constitution Hall is a great place to hear a show, but a tough venue to maneuver. The lines are long. The bathrooms are in inconvenient places. The seats, especially in the upper reaches, have extremely limited legroom.

    Having driven more than 500 miles over the previous two days, I had to get up midway through the show and walk around a bit, so I went down to the restroom and saw an usher I had talked to while waiting in line earlier. Listening to the music, we made momentary small talk about the show and I mentioned my connections to the cause, then told him I had to go back up. I didn’t want to miss “Fire Away.”

    At that point, the usher opened the door and said, “Go on in,” pointing me to an empty seat in the orchestra section. “Wait a few minutes,” this random stranger said, “and I’ll take you up a little further if I can.”

    After standing in the back of the orchestra for a few minutes — by this point no one was sitting — the usher tapped me on the arm and escorted me up toward the front, just five rows from the stage. “Stand here,” he said. “You won’t have a problem.”

    And then he left without a trace. Two minutes later, Stapleton started playing “Fire Away,” just in time for me to pull out my phone and record it. At the end, he asked the boisterous crowd to repeat the last chorus, holding up their phones to shine a light on issues that are underreported and often unseen.

    The audience complied. Here is the video I took of the performance.

    Last month marked the 12th anniversary of Brian’s suicide. Next Monday marks the sixth anniversary of Lindsay’s. That time has passed so quickly is sobering in and of itself.

    On Saturday, Lindsay’s family will participate — as they do every year — in one of the Out of the Darkness walks sponsored by the American Foundation for Suicide Prevention. If you would like to help, go to the team page here.

    Pay it forward. It's the least we can do.

  • Talking About the Bipolar Tiger

    In many ways, Patty Duke could have been — and perhaps should have been — a child star statistic. The early rise to childhood fame, the alcoholic and mentally ill parents, the controlling and abusive managers led to an adulthood featuring multiple marriages and affairs, suicide attempts, and her own struggles with drugs and drink.

    Despite a persistent feeling that “something was not right, or even more intensely, that there was something wrong with me,” Duke refused to get help until she was in her mid 30s, when she was diagnosed with bipolar disorder.

    “I wasn’t crazy. I didn’t need their help,” she said in a 2011 interview with the girlfriend of a writer I once supervised. “I was on an intimate basis with God. I told God what to do, and He did.”

    Duke managed to survive, and ultimately thrive, in the second act of her life, which ended Tuesday at age 69. She started taking lithium, going to therapy and talking to anyone who would listen about mental health issues; Duke was a keynote speaker at Jill’s American School Counselor Association conference in 2011.

    She attacked the stigma around mental health as fiercely as she attacked a script, writing two books and speaking across the country about her experiences.

    “I’ve survived,” she wrote on her website. “I’ve beaten my own bad system and on some days, most days, that feels like a miracle.” 

    As our kids transition into adulthood, Patty Duke’s story resonates with our family. Now living in New York, our son is navigating the tricky move from child actor to adult actor. Back at home after a few months in Florida, our daughter is learning how to be an adult and trying to manage her bipolar disorder. Their siblings are dealing, in some ways, with the unintentional collateral damage caused by family circumstances.

    The treacherous path that we call parenthood is littered with block after block of crossroads. Left, right or straight, many decisions feel like an endless game of second guessing. Did we do the right thing? Are we doing what’s best for everyone? Is that possible?

    The answers are not clear cut, but we continue to try.

    ••••••

    People are starting to talk more openly about "it."

    Five years ago, when Ben was in the ensemble of “Billy Elliot” in New York, he met Jonathan Bucari, a French filmmaker who had moved to the U.S. and was starting work on a short film called “Illness.” The mother of one of Ben’s cast mates, Carina Rush, agreed to produce the movie, which looked at a family’s struggle to cope with the erratic behavior of their middle son and the discovery that he has a mental illness.

    After winning multiple awards, “Illness” has been expanded to feature length and retitled “No Letting Go.” The 104-minute film, a labor of love for Carina, Jonathan and writer/producer Randi Silverman (who based the screenplay on her own life), has received strong reviews for its handling of the sensitive subject matter and performances. 

    “No Letting Go,” which was released in theaters this month in New York and Los Angeles, was made available on demand Wednesday for “World Bipolar Day.” An event created in 2014 to bring awareness to the disorder and to eliminate the ongoing stigmas surrounding mental illness, “World Bipolar Day” is held annually on the birthday of painter Vincent Van Gogh, who was believed to have suffered from the illness.  

    Also on Wednesday, a webcast held at the University of Michigan Depression Center featured a panel of experts and contributors to the upcoming PBS documentary, “Ride the Tiger: A Guide Through the Bipolar Brain.” The webcast and the one-hour documentary, which focuses on cutting edge mental health research amid personal stories of people with mood disorders, are fascinating and worthwhile uses of your time. Both are available to stream now on the PBS website; the documentary premieres on PBS stations on April 13.

    Throughout “Ride the Tiger,” which I watched after Jill alerted me to the webcast, those affected by the disorders talk about their journeys, what they’ve learned, and how they face the stigmas associated with mental illness.

    The researchers discuss what they are doing to find out where biological breakdowns occur — bipolar is not, despite what some may think, behavioral. It is a medical diagnosis that affects the brain. The researchers show how they are trying to find ways to pre-empt, fix, or rewire the brain so the manic and depressive swings don’t take place.

    One of the documentary’s contributors, author Melody Moezzi, recently wrote an excellent Huffington Post column that talks about “Thriving With Bipolar Disorder.” In it, she notes how it remains difficult for people to talk about mental illness. 

    “For God’s sake, we still call it “mental illness,” as though the brain weren’t a fundamental part of the physical body. Given the prevalence of this colossal oversight, not to mention a grossly underfunded mental health system that relies heavily on condescension, coercion and incarceration, it’s hard not to support any day that might bring more attention to brain disorders.”

    The first person to appear in the documentary, somewhat ironically, is Patty Duke. It is her last screen appearance.

    •••••••

    After her diagnosis, Duke did everything she could to promote awareness and eliminate stigmas as she brought stability to her own life. Her last marriage remained solid for 30 years. She managed to forge close relationships with her sons Sean and Mackenzie Astin, both of whom also became actors. In the 2011 interview with Elizabeth Zavala, almost 20 years after her diagnosis, her voice trembled as she described her sons’ upbringing.

    “They never quite knew who was going to be on the other side of the door. It could be the nice mom or this raving, ranting, raging, out-of-control creature … It took a while for these little boys to trust me again. They do now. They have tremendous respect for my recovery and amazing generosity in their forgiveness of me, as long as I take my medicine.”

    On Tuesday, Sean Astin published a note announcing the Patty Duke Health Project, a program that “will fuel a multi-level approach to achieving results for those suffering with mental illness and their families and communities.” You can make a donation to the initiative here

    “Her greatest achievement was confronting her mental illness and making her story public,” Astin wrote. “She crossed the nation speaking and campaigning and lobbying for mental health. My mom took her place as a mental health advocate in the greatest tradition of noble leadership.”

    May her efforts not be in vain. We need all the advocates we can get. It’s just too important to rest on stigmas.

  • Control (and Stop) Gun Violence

    In general, I try not to be a provocateur on social media's chosen issue of the day. I prefer not to rile people up, in part because it’s a time suck and in part because you rarely hear substance over the shouting.

    But given our family’s circumstances, it’s impossible not to talk about mental health issues, especially as they relate to children. And with the staggering increase in mass shootings in this country, all too often tied to people with mental health problems, it’s becoming more difficult not to say something about gun violence.

    So here goes…

    ••••••

    We might not agree on gun control, but I think we can agree on gun violence. And there’s way too much of it these days.

    Two weeks ago, a 26-year-old gunman killed nine people at an Oregon community college before committing suicide. Earlier this year, nine people were killed at a church in Charleston, S.C. Before that, there were mass shootings at a movie theater in Colorado and a school in Connecticut.

    And the list goes on and on. Between 2004 and 2013, according to numbers compiled by the Centers for Disease Control and Prevention, there were 316,000 firearm deaths. More than 1,000 mass shootings, an all-time high, have occurred in the U.S. since 2013. This year, in Chicago alone, there have been more than 2,300 gun-related crimes, and it’s estimated that someone is shot in the Windy City every three hours.

    Yesterday, Jill was visibly moved and affected after attending a daylong “Domestic Violence Awareness Summit” in Washington, D.C. Hosted by former Rep. Gabrielle Giffords, who suffered a severe brain injury in a 2011 mass shooting that killed six and injured 13, the summit featured various speakers who talked about the ravaging effect of gun violence on their lives.

    Giffords and her husband, former astronaut Mark Kelly, formed the group Americans for Responsible Solutions to talk about ways to stop gun violence, particularly against women. They have raised almost $25 million for a political action committee to promote legislation that will address gaps in gun control laws.

    The statistics they cite are just as staggering as some of the others I’ve cited:

    • Women in the U.S. are five times more likely to be killed by their abuser if that person has access to a gun.

    • More than two-thirds of spouse and ex-spouse homicide victims between 1980 and 2008 were killed with firearms.

    • More than half of all murders of women in the U.S. are committed with a gun.

    “We don’t have to agree about everything, but we can agree on this,” said Giffords, who believes people convicted of stalking and domestic abuse should not be allowed to possess firearms. “We can change our laws. We can fight for responsible solutions.”

    ••••••

    Just after the Oregon shooting, I walked into a local gas station. A TV was tuned into CNN, which was running non-stop coverage. I shook my head and said to the clerk, “This is sad.”

    The clerk, who was either in her late teens or early 20s, put her fingers up in air quotes and said, “Yeah, and I’m sure they’re going to call it a mental health issue.”

    That’s when I knew I had to start saying something about this. Yes, the majority of mass shootings occur because someone who is mentally ill gains access to a firearm.  But it terrifies me that mental health issues and gun violence have become inextricably tied.

    Here’s another fact: Most people with mental health issues are not violent, but the potential exists. As a parent of a child with a mental illness, the thought of her ever coming near a gun frightens the hell out of me. I see her impulsivity and her potential to flash to anger while manic/depressed/mix of both, and I can't imagine what would happen if she had a firearm in her hands at the point when things are totally irrational.

    What does it say about this country’s attitude toward difficult issues that we can talk about mental health awareness and services only in the face of record gun violence? I think it says a lot.

    ••••••

    Recently, while working on a freelance story about trauma-informed public schools, I interviewed several people with experience in dealing with crisis situations. One interview was with David Schonfeld, director of the National Center for School Crisis and Bereavement.

    Earlier this year, five students and three teachers filed a lawsuit against the Compton Unified School District, saying the system fails to educate kids who are exposed to repeated violence and trauma. The lawsuit also will test whether “complex trauma” is considered a disability under the Americans with Disabilities Act; if so, schools could be required to direct funds to ensure students receive adequate care.

    Schonfeld, who is not involved in the Compton lawsuit, said he is not sure whether the case has legal validity. But he then told a stirring story about the effect of long-term poverty and violence on a community.

    “I was talking to a group of teachers recently in an inner-city school system that is known for having gang violence and extreme trauma, and one said to me, ‘If 20 children die in a suburban school district, it’s called a natural disaster. When it happens here it’s called a typical day’,” he said.

    Schonfeld was shocked by the teacher’s seeming belief that “it was ‘normal’ for children to be in gangs and ‘normal’ for children to murder other children.”

    “That’s never normal for a child,” Schonfeld said during the interview. “Common maybe. Tragic definitely, and something that happens with alarming frequency, but as soon as your staff starts to think it’s normal than they’re not going to help the kids try to do something about it.”

    The teacher later apologized for his remarks, but Schonfeld said they illustrate the crux of the problem in many school districts where violence is common.

    “These kids experience so much loss, and adults don’t try to help with it because they’re overwhelmed and don’t know what to do,” he says. “So the kids stop asking for help and turn to their peers, gangs, and other forms of support. Just because they stop talking doesn’t mean they don’t need help. In reality, they need it more than others.”

    ••••••

    The previous story has limited bearing on the current gun control debate, and is only tangentially related to the issues the panel brought up yesterday. But I was surprised by how affected I was by the interview.

    Just like you, I don’t have a definitive answer, only opinions informed by my individual and familial circumstances. I’m not, despite what you may think, against responsible gun ownership.

    Jill and I know people who collect guns for their historical value. They are responsible, good citizens on this planet. They take safety seriously, make sure all the rules are followed, and are firm believers in the 2nd Amendment. They feel just as horrible as anyone when something like this happens, and they're working to do everything they can to encourage responsible ownership.

    What people don't seem to get in this debate is there’s no either/or solution. I would never own a gun, but that's due to my personal situation. I don't see how anyone with a child/friend/loved one who is lacking in stability would even consider owning a gun, especially if child/friend/loved one could gain access to it in some way.

    The key here is that we’ve got to put our polarized views aside long enough to find some reasoned, thoughtful solutions. We've got to do something, sooner rather than later.

    Gun control has been a debate in this country for generations. There should be no debate about preventing gun violence. #StopGunViolence

  • Understanding Bipolar: A Child's View

    Recently, I was looking through old files for a project I’ve been researching and happened upon a children’s book that Jill and I worked on several years ago. With Kate moving to Tampa, it was a timely find.

    The book, I Just Don’t Understand, was based on a phrase that Emma used a great deal when we tried to talk about Kate’s mental health struggles. At the time, Kate was going through puberty and Ben had just left for New York — this was 2009. Neither twin understood why their sister would be loving one minute, borderline abusive the next, and destructive the following.

    In developing the book, which Nicholas illustrated, we created the character of “It” to separate Kate the person from her disorder and diagnosis. “It” helped us cope with the mood swings and shifts that bipolar and its rotating companions brought.

    The book got some interest from one publisher, but it never made it to shelves. One factor, the publisher said, was the drawings were not sophisticated enough. We didn’t want them to be, and we appreciated Nicholas’ insight into his sister.

    The second factor, and likely deal breaker, was that the story did not end on an upbeat note. Two readers who saw the book before we sent it off made that remark, and so did the publisher. We resisted making changes, because that would not be true to our story or the stories of others we’ve read about and met.

    While I get that happy endings are what test best, this story isn’t one you wrap up neatly with a bow. An illness such as bipolar is an ongoing, lifelong struggle that is chronic, not cured. You learn how to manage it; you don’t want “It” to manage you.

    Kate has spent the last six years learning how to deal with her situation. The process took multiple hospitalizations as well as intensive therapy for all of us. Now that she’s left the nest and is living just outside Tampa, Jill and I decided to share the book with anyone who can use it.

    So when you get the chance, download the PDF here — it's only 5 MB — and start a conversation with your family and friends. Increasing understanding about mental health issues is critical for individuals, families and society as a whole.

  • Robin Williams: A Class Act

    Robin Williams is dead, the victim of an apparent suicide.

    A great actor and comedian with one of the most brilliant minds we've ever seen, he also was a tortured soul who was forthcoming about the demons he faced. Anyone who has ever dealt with depression or seen a family member suffer from mental illness knows how life can be a minute-by-minute battle against hopelessness.

    I'm so sorry hopelessness won.

    I remember watching him outside "Bengal Tiger at the Baghdad Zoo," which was in the theatre next to "Billy Elliot," talking to people and signing autographs. In fact, I won tickets to the lottery on the opening night of previews, meaning I had a front row seat to his Broadway debut.

    One night during the run, Jacob Clemente and Ben went to see the show and tried to get a picture afterward. Security said no, but he yelled out, "Hey, the Billy boys!" and insisted that they come over.

    A class act. Too sad. Too soon.

  • It's Time to Wake Up

    Get ready for a rant. But first, a few questions to warm you up.

    What will it take to improve the state of our country’s mental health care system? When will our elected officials stop being so polarized and shortsighted about the lack of funding, beds, and available care? When will health insurance companies get their hands out of our wallets and take steps to promote mental as well as physical wellness?

    I’m not terribly optimistic. Nor was I terribly surprised when a study released this week said more than half of teens with psychiatric disorders go untreated. Also not surprising: Those who do receive treatment get it more often from school counselors, pediatricians, and probation officers instead of mental health specialists.

    As a country, we should be ashamed.

    Yesterday, a Virginia state senator and former gubernatorial candidate was stabbed multiple times at his home. The culprit: His 24-year-old son, who received an emergency mental health evaluation on Monday but was sent home after authorities could find no psychiatric beds in Western Virginia.

    Today, Creigh Deeds is in the hospital in fair condtion. His son, Gus, is dead from a self-inflicted gunshot wound.

    ••••••

    My wife and I have a teenage daughter who has been diagnosed ADHD/bipolar, a genetic one-two punch that leaves her vulnerable to irritability, manic highs and deep, deep lows. Throw in a propensity for anxiety — one that manifests itself in physical tics that are often painful spasms — and it is a constant struggle for her to manage her mood.

    Bipolar, or “it” as we used to call the disorder, lurks just below the surface, ready to erupt at a moment’s notice. One day you have rapid, pressured speech and feelings of invincibility; by that evening, you might see anger, extreme sadness, or the desire to do absolutely nothing.

    In some ways that last description fits many teenagers who don’t have a formal diagnosis and a list of prescriptions a mile long. But what makes “it” so special is that it takes those typical teen urges and impulses and puts them on red alert.

    As Kate’s parents, we have tried almost everything medically imaginable to help. Testing, doctors, psychiatrists, therapists, prescriptions. We’ve taken hard-line stances and tried to use kid gloves. What we’ve discovered is that what works one minute won’t necessarily work the next, and that’s exhausting for all involved.

    Especially for our daughter.

    ••••••

    Sadly, the survey results released Monday were almost predictable. More than 10,000 teens participated in the National Comorbidity Survey Adolescent Supplement, a project led by Duke University professor E. Jane Costello. Of those surveyed, only 45 percent who have a psychiatric disorder received treatment in the last 12 months. Among the providers, mental health specialists ranked behind pediatricians, school counselors, and probation officers.

    Not surprisingly, the survey said those more likely to act out — i.e. the ones with ADHD, conduct disorder, or oppositional defiance disorder — were the ones most likely to receive services. Those with phobias and anxiety disorders were least likely to get treatment.

    Costello understated it when she said people don’t “take psychiatric conditions as seriously as they should … despite the fact that these conditions are linked to a whole host of other problems.” She blamed that in part on the lack of consistent care and the limited number of qualified mental health professionals who can address the issue.

    That’s something we’ve encountered when trying to find help for Kate. She has received the most assistance from caring people at her high school, even though it took us some time and a bunch of red tape to find the right fit. But due to a shortage of child psychiatrists in the area, she’s had only two since she was diagnosed — one an old-school practitioner who didn’t bother to have a computer, the other a doctor we found three years ago.

    Neither takes insurance; like all child psychiatrists we’ve spoken with, they prefer to leave that paperwork to the parents.

    Our options also are limited if we have to take our daughter to the emergency room for treatment related to her condition. The hospital will not let her stay overnight; if she is stable, she is sent home. If further (read “emergency”) treatment is needed, we have the option of one facility in Maryland, one in Washington, D.C., one near our home in Northern Virginia, and one in Richmond, 90 miles away.

    And that is only if they have an available bed at that time.

    Once admitted to one of those four facilities, all of which have the warmth of your average jail cell, the patient is kept until they are considered “medically stable” — no longer a threat to self or others. At that point, insurance — if you’re lucky enough to have it — stops paying. The bills, more than $1,000 a day, start adding up if you want to (or are allowed to) keep the patient there for additional treatment. Oh, and psychiatric services — remember the no insurance factor — are a separate bill.

    And we wonder why it is so difficult for people to receive treatment for mental health issues in this country?

    ••••••

    Fortunately, earlier this month, the Obama administration finally brought some “parity” to the process when it issued rules that require health insurance plans to offer the same coverage for mental health and substance abuse claims as they do for medical and surgical procedures.

    Prior to the rules being put into place, most insurance plans would pay 80 percent for medical care and only 50 percent for mental health claims. Now, thanks to those rules, insurance plans must cover the same number of inpatient hospital days for mental and physical illnesses. Insurers also can’t require many of the onerous preauthorizations — a bureaucratic maze in their own right — for mental health care like they did in the past.

    The rules are not perfect; Medicaid recipients and the Children’s Health Insurance Program still don’t have mental health parity requirements. But they are a great first step.

    And before you jump into the Obamacare debate over this one, note that the law was passed in 2008, as part of a gigantic Wall Street bailout that then-President Bush signed. It has taken five years for the rules to be issued, a shame in and of itself.

    ••••••

    There has always been a stigma of shame, along with a stinging level of insensitivity, around people who have mental health issues, especially among our young people. It's only when tragedy occurs — like the mass killing in Newtown, Conn., last year, or the one yesterday in Virginia — that attention seems to be brought to the topic. Ironically, research has shown the mentally ill are more likely to be victims rather than perpetrators.

    Bipolar and ADHD do not have symbols, like pink ribbons or the faces of cute children, that we can rally around. Instead, those symbols — the faces of people like our beautiful daughter — remain largely anonymous. 

    How many more tragedies will it take before we finally wake up?

  • Raising a Bipolar Child

    Note about this entry: This essay was printed in the May/June 2009 issue of Exceptional Parent, a national publication for families dealing with children and disabilities. 

    As I write this, my daughter is sitting at the turn of the stairs between the main level and second floor of our home. Feral sounds are coming from deep in her troubled soul. 



    The fact that I’m writing this now should tell you something. Sobs and screams are nothing new, but rather part of an ongoing bipolar cycle. 

It's a cycle that storms from “I can do anything!” to “I can’t do anything and no one understands me!” — from inviting the neighborhood to an impromptu basement sleepover to “Everybody hates me!” 


    I witness, and often participate in, this mental ping-pong match, with a field-level position for the square off between the opposite extremes of my daughter’s personality. But when the spillover begins, when anger and confusion turn to this horrible, morale-crushing sadness, I’m usually not welcome. 


    “MOMMY! MOMMMM-EE-EEE!”

    I go to check on her, but she curls tighter in her fetal ball. She looks up and says, “Leave … me … alone” in an almost guttural voice, then screams for her mother again. It’s pointless to argue, so here I sit, living a version of the first 20 minutes of Saving Private Ryan.

    I’ve written about my daughter for her entire life. It’s how I explain to myself and others what it’s like to be her parent, one of the two people most responsible for her well-being. The right words elude me more often than not.

    My wife — bone weary from the day, the week, the responsibility that work and raising three children bring — tries to soothe our firstborn. Heroically, she helps our daughter navigate the tangled world of activities, adolescence, friendships, siblings, and sixth grade. 


    More often than not, I feel helpless.

    At times, my daughter talks in a rat-a-tat-tat cadence, tapping from topic to topic with little rhyme and less reason. So much information is being processed that she can’t get the words out fast enough. 

In quiet moments, when she is acutely self-aware, she says her brain is constantly pounding because she has so many thoughts to sort through. She calls it "eating steak through a straw." 


    Then at times like tonight, you pray that she will just come back from the deep dark hole, that soon she’ll be standing in front of you, yearning for love and approval, knowing that what happened just wasn’t “right.”

    Since I started writing, this part of the cycle has begun. She has calmed down, come in for a hug, said she was sorry, and quibbled briefly with her mother over getting something else to eat. It’s 9:30 p.m., and she is asking, with dark circles under her eyes, for something sweet. 
Mom knows better than to relent. (Remember this formula: Late Night Sugar + ADHD + Bipolar = False Energy with a HUGE Downside.)

    Fortunately, for all concerned, there is no further argument. This is not always the case.
This also is not your typical adolescence. It’s not how any of us imagined it; no parent or child would.

    It’s almost unfathomable to think we are the lucky ones in terms of the bipolar spectrum. 

But, from what we see and read, we are. She’s doing well in school, relatively speaking, although holes in her learning are becoming more exposed as she gets older. She’s gifted in many ways, none in the traditional, linear sense. And she holds it together outside the home, which serves as both her cage and her sanctuary.

    Amazingly, she has maintained a sense of wonder that remains childlike even as she approaches the teen years. She’s extremely artistic and creative, never more than while manic. But even in non-manic modes, she loves—needs, desperately so—to be doing something. 

Down time is for sissies.

    She is drawn innocently to similarly wounded souls, fawning over animals and friends until something (who knows what?) draws her attention away for good. She’s not being spiteful; truly she is not. It’s just impossible to focus on anything for too long, so we follow behind and inevitably pick up the pieces. 



    Blessed with a dancer’s lithe body, she moves across the floor with a grace and beauty that will make your jaw drop. When her jaw juts to the side, you should worry. 

That’s when you can see “it”—that place behind her eyes. 

“It” courses through her movements, gestures, actions, the tics that may or may not be medicine related.

    All are hints that something isn’t right; more often than not, “it” is quite wrong. 


    A few minutes ago, I checked on her. She is finally, fitfully asleep. In eight to nine hours, the starter pistol will fire again, beginning another cycle full of promise, dread, and the question, “Who knows what the day will bring?” 


    Who knows, indeed? 

Friends who don’t know ask if nights like this leave me numb. That’s not the right word, but I struggle to explain my daughter to myself, let alone to her siblings or to others who aren’t in this position. 

You can’t allow yourself to be numb; parental diligence demands that you not. Mostly, I manage to separate the two — the child and “it” — understanding that we’re not alone. Other parents and families deal with much worse.

    
All I can say is damn “it.” 

I will never say damn her.

  • The Oldests

    We should have known then that something was different about Kate. And I think, deep down, that we did.

    She walked at nine months, graduating to running two months later. She was talking in full sentences at a year. Her tantrums had a ferocity to them — “This is a test of the Emergency Broadcast System!”

    And she never slept. To this day, I don’t think she ever rests.

    Kate, our oldest daughter, is ADHD/bipolar. She also is very bright, yet she wrestles with paranormal forces that lurk inside her brain. At times, she is a hard child to embrace, as if the disorder creates a force field that prevents you from warming up to her, even though that’s what she wants and needs more than anyone.

    ••••••

    He wants nothing more than to be on stage — it’s his calling, he says. And he has to sit on the sidelines while his younger brother moves (seamlessly it seems) from show to show, graduating from recitals to the Washington, D.C., stage to New York in a remarkably short period of time.

    Nicholas also is a child of divorce, the oldest child in our family. Geography requires him to travel at least 250 miles one way to see us.

    He’s split between two families with five half siblings, all with different interests, strengths, and challenges. He’s divided between parents who genuinely don’t like each other. He is so ready to get on with life after high school, but deep down I think he’s nervous about his future and what it holds for him.

    He looks just like my ex; in many ways he acts just like me.

    ••••••

    Nicholas and Kate are my oldest children.

    On the surface, they’re like many above-average, middle/upper middle class kids you see today, navigating that all-too-difficult phase from 12 to 18 that captures, enraptures, exhilarates and frustrates them and us. They will be the first to tell you that their families love them. They will be the first to say that life is fun, but not easy.

    Welcome to the club, you think. You'll learn.

    At times, you want to shout how much worse they could have it. (Remember the speech your mom and dad gave you when you wouldn't finish your food?)

    And while all of that is true, this is their reality.

    It’s our job to show them how to navigate it. A daunting task, indeed…

  • The Bipolar Parenting Challenge

    I should have seen it coming.

    I should have seen her face change when we mentioned the twins’ birthday. I should have seen the black cloud that parked over her head.

    After dinner, I should have tried another approach when helping her with homework. A few minutes after that, I should have taken the time, counted to 10, and not been so quick to respond in a firm voice that — under so-called “normal” circumstances — any parent would use.

    I should have, but I didn’t.

    And everyone paid for it — most of all Katharine.

    Having a bipolar child with a triple A membership (anxiety, ADHD, and adolescence) is one of the most difficult challenges I face as a parent. Day to day, hour to hour, sometimes minute to minute, we never know which person will show up.

    Is it the sweet, vulnerable child overwhelmed by the faulty wiring in her brain? The ditzy, funny, engaging 12-year-old girl who can’t stop talking? The child who watches the clock almost obsessively to ensure that you get her to school on time, yet can’t tell you what day it is?

    Is it the little girl who can’t stand to see an animal stuck outside in the rain, or the enraged, angry, out-of-control person who locks herself in the bathroom, curls up in a ball, and screams at the top of her lungs for 30 minutes? Or is it, not so simply, all of the above?

    The last question is the best answer I have.

    ••••••

    The above paragraphs were written about 2:30 a.m. yesterday, several hours after Kate’s most recent outburst.  Sadly, this has taken on a familiar pattern — struggle, mania, struggle, confrontation, emotional spark (or acetylene torch, depending on your point of view), outburst, regret, sadness, and finally, fitful sleep.

    The collateral damage from these incidents forces everyone to reflect on what has just happened. Could anything have been done to stop it? Or were we just delaying the inevitable?

    Afterward, I never can sleep. I have to process what just happened and my role in it. And if I’m being honest, truly honest, I don’t always come out looking so great.

    As much as I care about and love my children, I’m far from perfect at parenting. Sometimes, especially in the heat of the moment, I have difficulty in separating the child and the illness, which we have dubbed “It.”

    Think about it this way: If parenting a child is difficult, then parenting a mental illness is impossible. Add them together and see the result.

    Over the past 13 years, I have written about Kate more than any of my children; for more essays on this, go here and here. In part it’s because raising a bipolar child is such rich material, filled with opportunities to try to explain the complexities to those who want the debate distilled in more than simplistic overtones. For a journalist, it's a great story.

    But it’s also a way to process and sift through the conflicting emotions I feel as the parent of a child who, at times, is quite literally “out of control.” Writing about Kate and our family’s internal struggles in confronting “It” has been a great source of comfort over time. Writing and reflection also help me process feelings that, left suppressed, likely would damage our long-term ability to have a relationship.

    It’s definitely your traditional father-daughter dynamic, albeit one on anabolic steroids. Often it feels like I’m standing on quicksand with her. I can only imagine how she feels.

    We are blessed, however, by the fact that Kate is so open about her feelings, her fears, and her anger. We also are blessed that she has numerous gifts and talents. And we are blessed by the fact that she truly wants to help, that she doesn’t mind if we share our struggles with this with the world.

    Amid the joys, ironies, and hardships that we and others face in this holiday season of uncertainty, those are blessings I’m glad I can count on.

  • Tell Me About Your Child

    For the past few days, Kate has been rapid cycling. For those of you who are fortunate enough not to know what this means, think about a light switch run by a small person who thinks it's cute to turn on and off the lights in rapid succession.

    Except in this case, "On" is manic, with thoughts racing a mile a minute and exaggeration flowing at all times. "Off" is horrifically sad and angry — adolescence on steroids.

    It's exhausting, not just for us and for Emma, but for Kate as well.

    So, in our ongoing search for life's little ironies, we discovered one tonight. Digging through our daughter's book bag, Jill found a letter from Kate's creative writing teacher: "In a Million Words or Less … Tell Me About Your Child!"

    The assignment was handed out last week; the due date, of course, is tomorrow.

    ••••••

    Below is what I came up with and attached, along with the essay I posted earlier this evening.I hope each provides you with some insight into parenting a bipolar child.

    Kate’s highlight reel reads like this:

    Born two days after Christmas. Always restless and difficult to soothe as an infant and toddler. Walked at nine months. Twin siblings born before she turns a year. Diagnosed with ADHD at 5. Accepted into GT program between 2nd and 3rd grade. Diagnosed as bipolar at age 10. Hits an academic wall in 5th grade. Mood disorder never goes away. Sixth grade hits a major wall and pulls out of GT. Enters middle school and has to be in basic skills.

    Starting over. Struggling to find letters B through Y in the alphabet; prefers to go straight from A to Z instead. Always has enjoyed art. Finds comfort in drawing and sketching. Wants to be a fashion designer, but has no patience to sew. Loves to run and does so like a gazelle. Loves to dance; ironically ballet calms her. Has many ideas racing through her mind at all times; the mind never shuts down. Never. Until it overloads.

    Wants to have and make friends. Doesn’t know what the give and take of friendship really means. Anything can be solved by giving someone a present, usually used and/or created. Doesn’t matter what it is; it’s the thought that counts.

    Has anxiety. Sometimes so severe that it’s almost crippling; other times it’s like sending the space shuttle into orbit.

    Like any adolescent, both loves and loathes her siblings. When she’s rapid cycling, the two emotions overlap, causing confusion.

    It’s hard, this life. No one understands me. And no one tries, even though that’s what we’ve spent her entire lifetime trying to do.

    From an intelligence standpoint, she should not be in special ed. She — and her parents — are alternately saddened and proud that she has the label. This year, she knows that she’s been labeled, and she — like all teens — is both ambivalent and cares too much. Kate’s dual exceptionalities represent a conundrum that school systems are ill-equipped to face, and we say this both having worked as educators in various capacities.

    Kate is someone who is almost incapacitated in her search for emotional equalibrium. She is beautiful and talented and so incredibly creative. She just hasn’t found the true outlet that she can hold on to that allows her to express her thoughts and emotions adequately.

    This week she’s trying creative writing, something that should — and can — be a natural outlet for her, especially given her parents’ backgrounds. The struggle will be in harnessing her innate creativity and not allowing herself to get bogged down and overwhelmed by the mechanics.

    ••••••

    Here's what I didn't tell the teacher: I love my daughter with all of my heart and soul, but her illness doesn't make it easy. My wife and I desperately want to do everything we can to make a difference in her life, and we're trying as hard as we can without getting bogged down and overwhelmed as well.

    Wish us luck. We need it.

  • The Opposites of Parenting

    A year ago, Ben made his Broadway debut in "Ragtime." Tonight, he is on stage again, marking his 158th consecutive performance in “Billy Elliot.”

    At home in Virginia, Kate is sitting downstairs drawing and painting, finally calm after an operatic outburst, an outburst that’s sad in large part because it was so predictable.

    If Latin were not a dead language, this would be called “parentis extremis.”

    I didn’t expect to be writing this on Saturday afternoon. I thought I’d be running errands that need to be complete. But I can’t. Emotionally and physically spent, all I can do is sit here and type — a RSS feed of pride and hurt, joyful emotion and deflating sadness.

    I am super proud of my children, and do my best not to disappoint them. All I want is for them to do their best and be kind to others in the process. Much of the time we are successful, but sometimes we’re not, especially when a mental disorder lurks in the background — never dormant, always waiting.

    ••••••

    You really don’t realize how hard stage actors work until you are around them. Ben has done eight shows a week, six days a week, since July 7. It's something that would test anyone's stamina, let alone that of a 12-year-old.

    Sometimes, we get asked why he's doing this, why we do it. Certainly this has tested our entire family’s stamina. At the same time, Ben wants this and works on it tirelessly. He sings in the shower, dances in the living room, and does his homework between scenes. He remains a kid at heart, and a good one at that.

    Some people wonder why we would “push” our child into this. I have met and gotten to know people who live vicariously through their children and I can tell you with certainty that’s not us. Life would be much less complicated if we didn’t go back and forth to New York every week.

    The thing is this: You do what you can for your children, whether it’s Broadway or travel soccer. And as long as they hold up their end of the bargain, you do it as long as you can.

    ••••••

    Is it wrong to admit that sometimes I don’t enjoy being a parent? Or that I get tired of all the requisite b.s. that goes along with the job?

    Yes, parenting is a job — some days with benefits, some days without. According to life’s HMO, you have to be in network to enjoy it.

    Many days that network includes your fellow parents, people with whom you bond while waiting in the parking lot at dance, or over a baseball practice. Something changes once you welcome another person — one completely dependent on you — into your life. Friendships that meant everything to you fade and sometimes disappear, replaced by diapers, then carpools in messy vans, then middle school football games on Thursday (not Friday) nights.

    The people you meet and are social with rarely are the same friends from college, the ones who could discuss obscure literature or music with you until 4 a.m., drunk on cheap beer or tequila (everyone has a bad cheap tequila story). Life’s great mysteries always seemed solved by a simple night of semi-lucid conversation on the couch. That is, until the next morning, when a new set of mysteries popped up again.

    Nostalgically, we say we miss those times, when in fact what we miss is the freedom they offered. Some crave that freedom like a drug, believing it is better to be on parole from daily responsibility. Others embrace the new reality that parenting and family brings.

    It took me a long time, well into my 30s, to embrace that reality. If anything, being a single parent for much of the past year has turned that embrace into a bear hug, reminding me how lucky I am to have Jill and these four talented children.

    But occasionally, the embrace feels like a chokehold.

    ••••••

    Life with teenagers is not easy, as my fellow parents will attest. Kate’s doctor says teens lose 10 years of maturity from the moment they become prepubescent and don’t get it back until the hormone surges slow down several years later.

    I can’t wait for that to happen.

    The bipolar/puberty combination has turned our daughter with a mood disorder into someone I don’t understand. She can be so sweet one minute, showing the kind, lovely, talented girl we know exists in there. Then on a dime, she becomes “Toxic Teenager,” host of her own pity party, and believer that she is the monosyllabic snark mistress of the universe.

    All the while screaming and crying at the top of her lungs.

    The verbal warfare during these times is intense, and it’s only gotten worse as her shape has changed and she’s gotten taller. The Chinese ping-pong team could learn serve and volley from us. Aaron Sorkin could write our scripts.

    The adrenaline that surges through her body during these fits and episodes dissipates almost as quickly, leaving her drained and remorseful. I try to remind myself, and her siblings, that the verbal venom we have to fend off is just as filled with self loathing.

    I started writing this piece yesterday, but couldn’t finish it, too tired and exhausted from the afternoon battle to continue while Kate continued her painting. Today, I returned to it, drained and suffering from the post-traumatic stress disorder that another round brought.

    Right now, at this moment, I take comfort in four things:

    • That Kate finds comfort in art and ballet.

    • That Ben is doing so well.

    • That Nicholas and Emma are such good people and such good siblings.

    • That Jill is coming home tonight so we can be together for two nights before the Thanksgiving round robin begins, another week of adventures for our family.

    That’s enough right now.

  • OK ... This One is a Little Different

    After a couple of days of sentimental postings, thought you might enjoy this...

    It’s ironic, in this past year of going back and forth to New York, that two shows — “Next to Normal” and “Wishful Drinking” — have involved women who are bipolar.

    Carrie Fisher's one-woman show, "Wishful Drinking," played last year at Studio 54, which is just down the street from our apartment. I never was much for the "Star Wars" phenomenon, but I've long admired her sense of humor and absolute candor in her writing. And "Wishful Drinking," a series of vignettes about her dysfunctional (to use the term lightly) family and her struggles with addiction and bipolar disorder, is extremely candid.

    It's also hysterically funny, and provides anyone with a great deal of intelligent insight into the struggles a person faces when they have this terrible disorder. (More irony in timing: A taped version of “Wishful Drinking” airs on HBO next month, just as the national tour of "Next to Normal" begins and the Broadway version gets ready to close in January.)

    I'm not someone who writes fan letters (my only previous one was to Richard Nixon, when I was 8, nonpartisan, and learning the presidents, but he was a little busy in 1973). So I'm not sure why I decided to write one to Fisher, except that I felt a sense of kinship after seeing the show.

    Here's an excerpt from what I posted to her blog:

    "Hooray, I’m #326! It’s a spot in life I’m familiar with.

    "Not sure if you’ll get this far down the list, but thought it was worth a shot. I’m not your run-of-the-mill, average, never-been-on-a-date “Star Wars” stalker; in fact, I’m a married father of four and writer who happens to be a huge fan of your non-acting career. I’m also the parent of a 12-year-old girl who is bipolar."

    I then went on to explain more about our situation and the roller coaster ride we live and breathe as parents and as a family. I didn't expect anything, really, but a response of some kind would have been nice. 

    Heck, even Nixon sent me a picture of the White House, even though he had a worse PR problem than Fisher does, if you think about it.

    I guess if I had seen my likeness on a Pez dispenser and been chased by the founders of Comic Con, I wouldn't bother to respond either.

    So much for fan mail.

  • Life With ‘The Situation’

    “Well, we’re back in our situation again,” my aunt said.

    It was Christmas Day — her 72nd birthday — and she had spent it eating alone at an IHOP in Central Texas. Her husband of 42 years was in a psychiatric hospital, and sadly, this was not the first time.

    I can count on my hands the number of times I have spoken to my aunt — my father’s older sister — since my grandmother died in the late 1980s. It was around that time that my uncle and I nearly came to blows over the handling of my grandmother’s illness, and at that point I pointedly walked away from two people who had a long-term influence on my childhood.

    A bit of background is necessary: My father became ill when I was 8, and for major portions of my childhood, I spent summers and school breaks in Longview, the East Texas town where my parents were raised. My aunt and uncle lived 10 to 15 miles from my dad’s parents, and I spent much of my time going back and forth between the two houses.

    Reflecting on that time, memories flash by like 15-second commercials from childhood, with yellowed and sepia tones. I remember sitting in a boat belonging to my aunt and uncle, hands on the steering wheel and making sputtering sounds with my lips as I imagined being in a high speed chase. I remember fending off the dirt dobbers, the flying bugs that nested in the homes they built in the ceiling corners of their carport. I can see my grandfather working in the huge garden he set up in their backyard, his skin leathered and tan in the years before he became tethered to oxygen. I remember the Dallas Cowboys games and my grandparents’ 50th wedding anniversary celebration at their house, my grandfather dying then.

    And I remember the confrontation.

    ••••••

    As I write this, my uncle is in a different hospital. His physical “situation” — my aunt’s word to describe his state at any given time — is not good. He has blood clots in his leg and in his lungs that are life threatening. And then there is the mental illness, about which my aunt is reasonably matter of fact.

    “He gets on these kicks,” she said on Christmas Day. “He gets revved up and he starts having fears and hallucinations. He gets paranoid. He can’t slow down. He can’t sleep. He’s all agitated and revved up, and then he starts being belligerent. I had to take him over there because I couldn’t have handled him when he is like this.

    “So,” she said with the voice of someone who has been through this countless times, “we’ll get his meds straightened out and then everything will be OK for a while, or at least until he has another one of his episodes.”

    My uncle was formally diagnosed with bipolar disorder in 2000, but he had shown signs of erratic behavior for at least two decades prior. Anxiety could make him extremely demanding and overbearing. At one point, he took a two to three week leave of absence from his job “due to nerves.” He retired in the mid 1980s, even though he was only in his 40s. No one knew, or spoke of, the exact reason why.

    “We were so dumb. I didn’t even have a clue what they were talking about,” my aunt said. “As he got older, it got worse, and when he turned 60 it completely got a hold on him.”

    ••••••

    I abhor violence. I don’t like TV shows or movies that glorify or wallow in it. However, I do understand primal instinct. The two fights I got into at school growing up were with people who said cruel (and not well thought out) things about my parents.

    And no one, absolutely no one, could say anything about my grandmother or cast a vote to prolong her suffering. End-of-life decisions are extremely personal, and when my uncle — during an extremely stressful point in time just days before her death — tried to take control and made a number of statements about what my grandmother “had to do” and what we “had to do” for her, I started to snap.

    And just as quickly, I walked away. Self preservation demanded that I not stay involved with someone who put me in a primal state.

    I kept in touch with my aunt and uncle through my parents, who served as intermediaries. We exchanged Christmas cards. Occasionally, and usually at my parents’ behest, I would call to check on them.

    This year, after my mom told me about my uncle’s latest meltdown and that my aunt had to eat alone on her birthday because he refused to see her, I decided to reach out and call her at home. After all, it was Christmas, and I had a confession to make.

    ••••••

    The conversation lasted 90 minutes. I asked questions and took notes, writing down parallels between some of my uncle’s episodes and those of my daughter, who also is bipolar. Their situations are different, in part because of age and gender, and in part due to the fact that no mental illness/disorder results in the same experiences.

    “It’s the strangest mess,” my aunt said. “Everyone has so many different forms of this.”

    She went on to describe how and what happened when my uncle’s “situation” became worse, how she has been on a decade long series of cycles that start with emerging paranoia and isolation, followed by anger and depression, then hospitalization and renewal.

    “I don’t know what causes this, but I know that when he becomes anxious about everything, he can’t do anything about it,” she said. “For a while, he just knows that he can do something better than everyone else, and he will drive that point into the ground if he has to, just to get his way.”

    What I appreciated most was my aunt’s candor — a trait I had not realized she shares with my grandmother. And what emerged in the conversation was her great strength in the face of mental illness. Why didn’t she leave him?

    “He’s a very kind man when he’s not all caught up in this, and it’s not something he can help,” she said, referring to his “crazy episodes” as blackouts. “When you get to know him, you know he’s not like the person he is when he’s in one of those states. I’ve just learned that the meds only hold him for so long, which means when they don’t work that he’s going to have to go to the hospital and stay for a while.”

    I told her about my conscious withdrawal from them, explained my reasons for staying away, and said how guilty I felt. “I do understand,” she said. “This is not an easy thing to deal with — for anybody.”

    Our relationship felt renewed by the end of our talk. She expressed her concern for Kate and — here’s that word again — our “situation.”

    “Fortunately, things are different now,” she said. “It used to be that people who went to a psychiatrist had a bad reputation, but now we know that they’re getting treatment for something they can’t help. It’s not something we expect to have in a child, or in a spouse, but they can’t help it. They just can’t.

    “You can help them, though, and others, too, by being open about all this,” she said, not knowing how much she had helped me — on her birthday.

  • The Adjustment Bureau

    For weeks now, I’ve seen ads for “The Adjustment Bureau,” the new movie about someone who tries to take back control of his life despite dark and perhaps sinister forces that are trying to stop him. Given everything our oldest daughter is going through in dealing with the sinister combination of puberty and bipolar disorder, the movie’s title aptly describes much of the last 10 days.

    Now 14, Kate has struggled to maintain any emotional equilibrium since the start of her eighth-grade year. Middle school is hard enough as is, but especially for girls riding the hormonal rollercoaster, and things have been steadily on a downward spiral since November.

    The level of pharmacopeia — multiple medications addressing multiple issues — was not touching the problem. Adding lithium — aka the “gold standard” drug for treating bipolar — didn’t help. Kate’s generally upbeat nature was being overwhelmed by pressured speech, tears, anger, sadness, and rage.

    When she could not stop twitching a few nights ago, we had to take her to the emergency room.  After consulting with doctors the next morning, we knew that something more had to be done, both with her meds and to help guide her out of an increasingly dense wilderness.

    We had entered our own personal adjustment bureau.

    ••••••

    According to the Child and Adolescent Bipolar Foundation (CABF), the past decade has seen a 40-fold increase in the diagnosis of children with bipolar, even though it remains far below the rate for adults. A National Institute of Mental Health study notes that at least 65 percent of adults with bipolar felt that it started in childhood or adolescence.

    For as long as I can remember, Kate has confronted the various — and multiple — stresses in her life in one of two ways: Curling up in a fetal ball and crying, or screaming at the top of her lungs. Sometimes, when you’re lucky, you get both in a span of just a few minutes.

    Medication has helped mask those emotions, but over time, as she has gotten older and moved into her teen years, Kate is no longer comfortable with the mask — on or off.

    That leaves us with a mix of hope and dread.  As her parents, we hope and pray that she is doing better, that something — in this case hospitalization — will help her to be better. Dread comes from experience, because we know that when she is positive that the other shoe is just waiting to drop.

    It’s interesting, because in our marriage, I’m almost always the one who takes the “glass is half full” view. Consider it Paul McCartney’s “getting better all the time” combined with an occasional “can’t get much worse” from John Lennon.

    And remember, neither was as good solo as they were together.

    With Kate, Jill usually takes the optimist role. My view is that we should not question why, but determine how best to deal with a 48-card deck that is missing several essential cards right now. This focus on analysis and solutions helps me to understand our daughter, but doesn’t work that well at times in the moment when things are fired up.

    Jill is more patient and better able to relate to her than I am. She frets and continues to search for solutions. For the longest time, she had difficulty accepting the fact that this is a long-term illness with no short-term resolution for our daughter’s condition, that she won’t be “normal” (whatever that is).

    In her view, this shouldn’t happen to a child.

    She’s right about that, no question. But it has.

    ••••••

    Every time a new drug was introduced, or the dosage increased, Kate always seemed to get a small bump. The family breathed a sigh of relief, only to learn that it was just temporary. As she entered adolescence, then puberty, then middle school, even the effects of the pharmaceutical bumps lessened.

    For the last several months, nothing has worked.

    We have been very honest with Kate about her situation, and have tried to explain what it is to her in positive — yet truthful — terms. Our family’s firm belief is that treating a brain disorder is no different than treating, say, diabetes (both have a biological basis). Mental illness should be discussed in the same matter-of-fact way that we discuss any long-term, physical disorder.

    The difference, however, is that treating bipolar, ADHD, and other types of these disorders is a crapshoot. What works for five people with the same diagnosis won’t work for numbers six through 10 because each person’s brain chemistry is unique. Since, according to CABF, the adult brain is not fully formed until age 25, treatment becomes even more of a shot in the dark with children and adolescents.

    Research also shows that girls tend to linger longer on the depressed side of the bipolar pool. Most bipolar medications on the market are more effective for mania than depression, which can make treatment difficult. Hospitalization or a stay in a residential facility often is the only effective way.

    We love our daughter, would do anything for her, and have tried everything to help. But “It” has refused to leave Kate — and by extension her family — alone. Progressively, we have become worried about her increasingly fragile mental state, and the anger that lies underneath. Physical and emotional safety, hers and ours, is an ongoing concern.

    ••••••

    Bipolar is an octopus, metaphorically speaking. It is not self-contained; if anything, it demands to always be the center of attention. You can tiptoe around a mood disorder all you want, but it still will strike out, often for the most miniscule things at the most inopportune times. Think of it this way: ’Roid rage has nothing on an ill, pissed off 14-year-old girl in a very dark place.

    This makes for a difficult family dynamic under the best of circumstances. And the past year and a half has been trying, as we juggle careers, teenagers, and commuting back and forth from Virginia to New York.

    Kate knows her internal spin cycle has been out of control. She no longer thinks her psychiatrist is effective and wants someone different. We’ve known her current mix of meds wasn’t working; in fact, her new doctor said her ADHD could have been misdiagnosed. After the twitching/convulsive episode last week, she begged us for help, saying she knows something is wrong.

    That’s what we’ve been dealing with for the past 10 days, and we’re hoping that we’ve got her medication sorted out — for now. Still, through individual and family counseling, other issues must be addressed as she works to find that elusive emotional equilibrium.

    In general, girls tend to internalize their emotions. Kate has suppressed hers for so long that the only way they know how to come out is in a rage. She has to be able to identify when she is upset or unhappy and learn how to deal with it. She has to learn how to be accountable for her actions — in school and at home.

    The problem is that she speaks in general terms, too general really, if she wants help. The art of in-depth debate and conversation, something that brings me great joy in this life, escapes her because she has no patience for it. And her coping mechanisms are so deep, so embedded, that it will take a very long time for her to find new ones.

    There are no magic wands. That’s for sure.

    ••••••

    Jill and I genuinely believe Kate wants — desperately — to be positive about life. But a fake positive has the effect of a false negative; no one wins. We have to work together to identify ways for her to have positive interactions with her family, a lesson that she can hopefully translate into friendships with her peers.

    At times, I provoke the situation with Kate, in part because I know that the only way she will stop pressing me — for food, for money, for stuff — is to make the emotional valve go off. That is not healthy parenting; I need to do better.

    I can’t imagine what it is like to be in her skin and to feel so uncomfortable all the time. I can’t imagine what it is like to feel like you can’t be alone, or that you must be doing something — anything — at all moments of the day.

    The counseling sessions we’ve had this week were about unmasking the real Kate. So far, they have not been terribly successful, although the medication adjustment has helped. What has emerged, however, is how important her ongoing treatment is. Chiseling away at something that is so engrained — taking apart to put back together — will take time.

    How long that will be, no one knows. I just hope we can all stay on the right path.

  • My 100th Post: 50 Days in Our Lives

    January 8: So, here we are, riding on a train to New York again. Ben is napping next to me, having finished a 13-hour, two show day only a few hours before, and we are going to see "Billy Elliot."

    It's the final show on Broadway, a place we left behind three months before when Ben joined the “Billy” national tour. For the past four weeks, the tour has been at the Kennedy Center, a 20-mile drive from our house and one of the places where this journey began.

    Immediately I flash back to our first train trip almost five years ago, when my little boy was trying to learn Gavroche's song. He didn't really know what he was doing, didn't really understand how the audition process worked, didn't really comprehend what was ultimately ahead.

    Neither did we.

    The "Les Miserables" audition was not a success, obviously. Nor was the first of many "Billy Elliot" auditions that started when he was 10. But there was progress; he kept getting calls to go back. And he kept going back.

    At that point, we had no idea where all this would lead, just that we had a child who had found an all-consuming passion and managed to remain a kid at the same time.

    That's our job as parents, striking the delicate balance between nurturing the passion and ensuring that he is a regular kid. The questions Jill and I receive most often are around this subject.

    "Has this changed him?"


    ••••••
 

    January 30: Three very long weeks have passed since I started writing this essay, and it’s been since last fall that I’ve contributed to this blog. That happens when you live in a Petri dish of puberty. Change is the constant in your life, and the weeks are long ones.

    Today I’m driving to Pittsburgh to pick up Ben and Ginno, the fifth “child” in our household. Ginno, who cared for Ben for the last several months in New York, has been serving as his guardian on the road for the past two weeks. He truly cares for our son; we’ve been fortunate to have him in our lives, along with Brian, Jill’s cousin and another one of the masses that help take care of our little boy.

    The 570-mile drive up and back is arduous and long, something I’ve gotten used to as a long-distance parent. For several years when my oldest, Nicholas, was in high school, I made the drive to North Carolina and back on the same, long day. Now Nick can come see us — a blessed development. He has matured so much and, at 19, is rapidly becoming the adult I always hoped.

    For the longest time, I have said I’m interested in being friends with my kids when they are adults. With Nicholas, there is reason to be encouraged.

    Ben has an Achilles tendon strain, which occurred in a ballet class in Cincinnati, and he’s out of the show for an undetermined period of time. Even though the injury is considered minor, it means he won’t play Michael, Billy’s best friend, because he’s supposed to be training for the show’s lead character.

    Billy, the elusive Billy Elliot. A boy who has warmed the hearts of millions and changed a lot of people’s worlds since the 2000 movie and subsequent stage musical. Ben has pursued the part for almost four years now, his first audition coming just after he received his first professional gig in “A Christmas Carol” at Ford’s Theatre.

    That seems so long ago.

    ••••••
 

    February 11: It’s a stressful time, and we’ve become pros at handling stress.

    Kate, our oldest daughter, is struggling. It’s something that seems to happen during this time each year, when the days become shorter and colder. She spent 18 days in an outpatient program over Christmas and New Year’s. Her freshman year in high school, which started so promisingly, has deteriorated.

    Starting shortly after Thanksgiving, Kate became progressively more manic. Her chances for academic success, which are subject to the cycles that come with being a bipolar teen, seem to be deteriorating as well.

    We are trying to transfer her to another school, one that is better equipped to serve students with emotional disabilities. One of her teachers — her case worker, no less — explains that if she would just turn in her work, her grades would be better.

    It’s become a familiar drill: Every time something new happens — new school, new meds, new teachers, new counselors — Jill and I have to recite again what has brought us to this point. Diagnoses, family histories, flaws, foibles — all are exposed yet again. Improvement, continuous though fragile, is the long-term goal.

    Ten weeks into a hyper manic cycle, we are worried.

    I had a chance to talk to Nicholas at length this week while waiting for the kids to get out from a movie. It was great to catch up, learn about his classes — he’s taking a buttload of hours and getting a new roommate — and hear about his upcoming audition. It’s a stressful time for him, too, but I’m proud of how he’s handling it all.

    Ben and I went out to take pictures today. It was bitterly cold, and the wind made things that much worse, but it was good to get out for a while. The boy has been housebound largely since he got home, although the PT has gone well and he seems to be feeling better. Ginno has returned to New York; we still don’t know what Ben’s training will look like.

    The sunset, however, is beautiful.

    ••••••


    February 17: I’m in Houston, visiting my mom for the first time on her home turf in two years, attending a conference related to my work. The weather stinks, but I manage to sneak out and take some pictures. Photography is a source of comfort, especially when I’m having such trouble writing.

    We’ve decided to send Ben back to New York, still not knowing with certainty what will happen with Billy and the tour. He needs to be away, to get back to some semblance of the life he has lived for 2+ years, and we know that. We’re still not sure what the next few months will bring. Even though things seem to be taking shape, we still have questions.

    Ben is not used to long periods of inactivity, not surprising given that he has worked steadily for the past three years. He is bored and restless, trying to make the best of the first major injury he has had as a performer. New York seems to be the perfect temporary antidote.

    As parents, that can be tough to accept, to realize your child — at the tender age of 14 — belongs in a place so far removed from the nuclear family life. And yet Ben has done the three things we’ve asked of him — stayed engaged in school, acted and worked professionally in a professional environment, and yet somehow remained a kid who still loves and needs his family.

    Once he plays Billy, Ben will be only the second child in North America to play the show’s three young male roles (Kylend Hetherington, one of the current Billys on tour, is the other.) That speaks to Ben’s versatility and, ultimately, his will.

    I don’t know how he does it. I’m not sure I understand how we do it, either.

    The doctor has changed Kate’s meds, but getting her into another school has been slowed by yet another bureaucratic hurdle, as has the process for getting Emma into her high school of choice. Emma has done everything right; she has good grades and exhibits patience at home and school that are beyond her years. But red tape threatens her ability to attend the school where she has thrived.

    In Houston, I call an official at the school that both my daughters — for completely different reasons — want to leave behind. Because a long holiday weekend is coming, we won’t get a call back until Tuesday.

    ••••••


    February 21: Things are starting to take shape. A plan is moving into place for Ben, who will resume his formal Billy training in Los Angeles in April, then return to New York in May for five weeks before rejoining the tour in June. If we’ve learned anything about life with “Billy Elliot,” it’s that patience is required.

    The school official calls. No word on Emma’s placement, but we have a transfer meeting set up for later in the week for Kate. I’m back in Virginia for three days before we head to New York to see the boy and Ginno. The bigger task: moving out of the apartment we’ve had for 2½ years.

    One problem: I left my wallet on the airplane when I came back from Houston.

    Fortunately, I don’t have a pile of credit cards to cancel, but it’s still painful. And it’s really no surprise, given everything that has taken place over the past couple of months, that I would do something so stupid.

    Almost two months before, driving in D.C. with Ben and a very volatile Kate, I had a minor fender bender. No one was injured, but I struck a car that was being driven by a member of the District of Columbia’s law enforcement community. And the car I was driving — a 2002 Volvo with 150,000 miles on it — decided it was time to hang it up.

    Things have to get better.

    ••••••


    February 27: Today is Kate’s last day at her old school. Later in the week she will start fresh in a new program. She is more stable than she has been since before Thanksgiving, and for that we are thankful.

    Jill and I drove up to New York the day before, to start packing the little apartment we moved into when this adventure began with “Ragtime.” It’s a day we’ve dreaded, in part because we’re leaving our son and some wonderful friends and memories there, and because it represents the end of a tremendously significant era in our lives.

    One reason Ben is on the tour is because it gives him a chance to play Billy. Another is because he could play Michael, a principal role, when the show was at the Kennedy Center over the holidays. Sadly, the show’s closing on Broadway meant that he made the right move in leaving New York when he did. Happily, going on tour gave him a chance to perform in front of friends and acquaintances that otherwise would not have seen why we do what we do.

    Now all we have to do is finish packing.

    We’ve decided to let Ben stay in New York for the next month, return to school during that time, and see how things go until he resumes training. Friends that we’ve made because of this experience — Ginno, Carol, Bernadette, Katie, Ruby, Todd, and Carole — are helping us with the transition.

    Last night the Oscars were on, and we sat on the couch and watched as they marched predictably to form. Cheers went up when Meryl Streep won in what proved to be the night’s only surprise.

    Today, Jill left to help Kate get ready for her new school, and found a surprise — a letter informing us that Emma will get into her school of choice as well. Ginno, Ben, and I continue packing. As day progresses into night, I go to my neighborhood bar with a friend.

    While there, I get a message I never expected. Ben is nominated for an award for playing Michael in Washington, D.C. On our last night in New York, he gets recognized in his adopted hometown.

    Things indeed have come full circle, tying us in knots at times in the process as we go through the extreme highs and the equally tough lows. These past 50 days have been one of the roughest periods we’ve experienced as parents and as a family.

    Fortunately the pebbles we stumble across slowly fill the potholes along the way.

  • "Fragile"

    The other night, as I left the grocery store in the all-too-familiar rush to get somewhere, I heard Sting's song "Fragile" pour through the speakers.

    “On and on and on and on. How fragile we are. How fragile we are…”

    Hearing the song — when did I last hear a Sting song, I wondered, especially from his solo career? — made me pause as I watched my daughter walk quickly toward the car.

    How fragile we are — indeed.

    Jill and I have come to dread this time of year, when the days get shorter, the gap seems impossibly wide between fall and spring sports, and the mundane, day-to-day nature of the school year moves into a high-pitch duet of sharps, flats, and off-key moments in time.

    Our oldest daughter, who turns 16 next month, is ADHD/bipolar. For the past two years, the period from November to March has been an unsettled, contentious time in our household, tension always simmering under the surface.

    Tension that, like a pot of boiling water, sometimes overflows.

    ••••••

    Writing is my form of therapy. And over the past three years, I’ve written about Kate and the trials she and we have faced many times — in this space and in other places. If anything, this blog is as much about raising her as it is about raising a family of performers.

    I haven’t written recently, even though my Facebook friends will attest that I haven’t lacked for things to say. I’ve even started using Twitter, if for no other reason than I can’t seem to focus for more than 140 characters at a time.

    I’m definitely the ADD part of Kate – the “H,” if I had it, was squeezed out years ago by parenting and my profession. My gene pool also contributed to her stubborn, dig in your heels, and win-at-all-costs nature of rhetorical discourse, even if that discourse is simply yelling at the top of her lungs. Our arguments feel like they come from some bad sitcom featuring ethnic stereotypes, or a reality show on TLC.

    In the end, however, it’s “our reality show,” and fortunately for us, the cameras are not on when these things happen.

    ••••••

    Five random thoughts about parenting:

    • Nothing exposes your flaws like being a parent. It’s the single hardest job anyone has.

    • Don’t get me wrong, I love my kids – all four of them. And I  can’t believe how quickly time seems to be flying by, especially since they’ve become teenagers. I realize that, in many cases, we’re coming quickly to the end of the adolescent marathon.

    • Parenting has taught me about life in a time-suck continuum. Blink and your toddler is a teenager. Blink twice and they’re off to college. (A three-time blink is not recommended, however, because that means your now-grown child will be living on your couch.)

    • There are days when I would rather take shelter in a Home Depot than face another parenting problem, and I can’t stand Home Depot.

    • I don’t see how President Obama does it. Being the parent to two adolescent girls is enough to turn anyone gray.

    ••••••

    This is the time of year, however, when my flaws are more exposed than ever. The usual stress that the holidays bring, along with the addition of four teens’ birthdays in a single month (December no less), is enough to put anyone on edge. And then there is “It.”

    “It” is our name for the illness, which always lingers but tends to take a long-term sublet in our daughter as soon as the sun starts setting before 6 p.m. I’ve always said that Kate’s implied motto is, “If at first you don’t succeed, try something else…” The always-restless nature of the ADHD child exacerbates that, and puberty has been no help.

    “It” is interested in stirring things up, in keeping the family’s mood on a flying trapeze. When her body runs out of energy, or when faced with something too difficult to deal with emotionally, “It” shuts down and takes a brief nap in the middle of a conversation.

    “It” is what happens when the days become shorter and less structured, and she starts to run out of options. “It” tells her to stay home from school, to raid the fridge for comfort foods and sugar, to be combative when confronted.

    “It” is all about feeding “It.”

    ••••••

    Early on, Jill and I made the conscious decision to be open about parenting and this illness. This summer, representing the American School Counselor Association (where she works), Jill spoke to a group of dance teachers from around the state and country about the dealing with teens with mental health issues. It was a huge success; everyone in the audience appreciated her advocacy and sincerity.

    Being open pays other dividends. Over the past couple of years, Kate’s siblings and relatives have become much more sympathetic and understanding as their knowledge has deepened. And we have had conversations with other parents who, like us, find themselves in a quandary about what to do and how to help their child navigate the social and emotional landmines.

    We don’t know any more than anyone else, but we can listen and share.

    And that’s important, because the day-to-day intensity and lack of stability that this illness nurtures is tough for us as parents. Navigating the teenage years along with the frustrations that build among others and us in dealing with “It” is never easy. How I respond to those frustrations and confrontations is imperfect, even on the best days.

    Nowhere am I more flawed or vulnerable than in my role as Kate’s father. But the same can be said for my dealings with Ben, Emma, and Nicholas as well.

    How fragile we are. Indeed.