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Out of the Shadows

Children’s Mental Health Week focuses on ending stigma and finding resources, in Idaho and across the nation.

By Liza Long
Artwork by Sheridan Smeade

When you first meet Chelsea Zielinski you see a vivacious, yet angelic seven-year old with golden hair, bright blue eyes and winning smile. “Chelsea can be a real charmer,” says her mother Jennifer, an Eagle resident raising Chelsea and three other children with her husband Kevin.

But Chelsea’s story has a dark side. Their adopted daughter has been with the Zielinski’s since she was two years old, when she was removed from her birth mother because of neglect. Chelsea’s biological family history includes severe mental illness. In the past five years, Chelsea has been diagnosed with reactive attachment disorder, oppositional defiant disorder, developmental delays, a mood disorder and a severe food addiction. As they’ve sought effective treatments and answers for their daughter, the Zielinski’s have found themselves increasingly isolated in their own community.

slide-art-full“It’s hard to have a normal routine,” Jennifer explains. “We have lost several friends because people don’t understand what we’re going through.”

The Zielinski’s wanted to save this beautiful little girl from a life of neglect and abuse. Instead, they have found themselves battling with a system that routinely throws up barriers to effective interventions and treatments for children with mental illness. “Our pediatrician has been our biggest ally,” Jennifer says, echoing a national call for early diagnosis and coordinated access to care that begins with a primary medical home.

Though Jennifer feels like she’s on her own, she’s not: one in five children in the United States will be diagnosed with a “severe” mental disorder between the ages of 13-18. Mental health is an issue that affects children, families, and communities everywhere. And stigma remains one of the leading barriers to early intervention and treatment. Nelba Marquez Greene, mother of six year old Ana Lopez, a first grader who was senselessly murdered at Sandy Hook Elementary School last December, drew attention to the problem of stigma when she spoke to 60 Minutes about the tragic gaps in our mental health delivery system: “As a mother, my heart breaks for Adam Lanza’s mother,” she said.

Mental Illness by the Numbers

  • One in five children has a severe, debilitating mental disorder between the ages of 13-18 (the most common is ADHD).
  • Lifetime cases of chronic mental illness begin early — half by age 14.
  • The average time between onset of symptoms and treatment for children is more than seven years.
  • Over a 12-month period, 60% of people with diagnosed mental disorders receive no treatment at all.
  • There are 75,000 taxidermists and only 8,000 child psychiatrists in the United States.
  • Untreated mental illness costs $2.5 trillion annually, more than cancer or other chronic conditions.
  • The largest mental health treatment facility in the United States is the Los Angeles County Jail, which houses 1,400 mentally ill patients.
  • My heart breaks for Adam Lanza’s mother too. Like Jennifer Zielinski (and like Nancy Lanza), I struggle daily to care for a child with mental illness. On the day I learned about the Sandy Hook shootings, I cried out for help on my blog, The Anarchist Soccer Mom, a cry that went viral after it was picked up by Boise State’s Blue Review and the Huffington Post. That essay, entitled, “I Am Adam Lanza’s Mother,” sparked a national debate about the importance of mental health to our nation and to our children.

    I have skimmed through thousands of comments on my blog—most of them from desperate parents just like Jennifer, just like me. Educators, physicians, and therapists also lamented the gaps in our current system and the ongoing attempts to deal with mental illness for both children and adults through the criminal justice system. Dr. Harold Koplewicz, Director of the Child Mind Institute, draws this chilling comparison: “When you have a heart attack, we call the paramedics. But when you have a psychiatric condition, we call the police.”

    I am honored to be working with Dr. Koplewicz and the Child Mind Institute this May on their Speak Out campaign, designed to give parents like Jennifer Zielinski the courage to talk about mental illness. In an online quiz at ChildMind.org, you’ll learn some startling facts about barriers to care: in America, there are more taxidermists (75,000) than child psychiatrists (8,000). And the worldwide cost of untreated mental illness is a staggering $2.5 trillion, according to estimates by the World Economic Forum. That figure doesn’t factor in the costs of lost productivity, missed school, unemployment, disability, homelessness or jail.

    Saddest of all, the average time between onset of symptoms and first treatment for some disorders in children is more than seven years.  This is what stigma does to children and families. We can’t ask for help until we admit that we need it. And admitting that you need help just might be the hardest thing you’ll ever do as a parent.

    “People with mental illnesses are our friends and neighbors. They want what we do—to live full, productive lives in the community.”—Ann Kirkwood, Idaho State University Senior Research Associate and nationally recognized expert on stigma.

    Ann Kirkwood, a Senior Research Associate and Director of the Youth Suicide Prevention Project at Idaho State University, offers insight into why talking about mental illness is so difficult. “Stigma diminishes self esteem, reduces chances a person will seek treatment, and encourages secret-keeping,” she says. “People with mental illnesses are our friends and neighbors. They want what we do—to live full, productive lives in the community. But we may not know they have a mental illness because they do not tell us due to stigma. They are afraid they will be treated as less competent or judged by those who think mental illnesses are somehow their fault. But mental illnesses are like any other chronic condition, such as diabetes or heart disease, and need long-term treatment like any other physical condition.”

    I know firsthand how hard stigma can be for parents. In my May 7 statewide address on stigma from a parent’s perspective, I plan to talk about the backlash that followed my decision to reveal my struggles with my son’s mental illness. Words have power, but they also come with consequences that are often beyond our control. When a state senator can propose a bill that would deny public education to children convicted of violent felonies or misdemeanors, when the nation’s largest mental health treatment facility is a jail, when the only way you can access needed therapies is to charge your child with a crime, we have a long way to go.

    Jennifer Zielinski is the Program Coordinator for the Parent Training and Information Center with Idaho Parents Unlimited, a statewide advocacy group that provides training and information for families of children with disabilities and also operates the state’s Family-to-Family Health Information Center. Jennifer took the first step. She spoke out. But Jennifer knows that speaking out won’t cure her daughter’s significant developmental delays or behavioral challenges. “I’m not sure what the meaning of our story is, just that we have to tell it,” she says. “My faith is what keeps me going.”

    Idaho Children’s Mental Health Week May 5-11

    Don’t miss the statewide conference featuring Ann Kirkwood, nationally recognized anti-stigma expert, Liza Long, author of “I Am Adam Lanza’s Mother,” Dr. Ninon Germain, child psychiatrist, and Judy Gapert, suicide prevention expert. The conference will be held live at the Department of Health and Welfare’s Westgate offices, 1720 N. Westgate Drive, on May 7, 2013, from 2:00-4:30 p.m.