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A Journey Through the Labyrinth of Mental Illness
Families confront a child with a mental illness, driven by a powerful combination of love, uncertainty, worry, and, in some cases, desperation.
By Katherine C. Cowan
Sara has always had the best laugh, joyful and infectious. She also is one of the bravest people I know. From the time she was an infant, Sara was an eager child who found fun in almost everything. She loved learning and people and took on new challenges and friends with delight. No one anticipated in those early years that sprouting within this happy, charming child were the seeds of the generalized anxiety and panic disorder that would frame much of her childhood and young adult life. Other than Sara, I suppose my husband Glenn and I were least prepared of all.
Behind every student dealing with a mental health problem is a family trying to grasp what’s happening to their child and struggling to do its best. That effort is often muddled, sometimes inadequate, and occasionally even counterproductive, but it’s almost always driven by a powerful combination of love, uncertainty, worry, and, in some cases, desperation. Educators naturally see a student with mental illness through the lens of learning. However, understanding the child and family perspective is critical to meeting the student’s needs effectively.
Our journey through the labyrinth of mental illness began when Sara was seven, although we didn’t realize it at the time. She became afraid to go to bed at night, a seemingly normal childhood fear. We did what parents do: We read extra stories, sat on the edge of her bed, rubbed her back, and tip-toed out of her room after she had fallen asleep, night after night. Sara couldn’t tell us what she was afraid of beyond not wanting to be alone. Despite our increasingly longer bedtime routine, things got worse, not better. Sara started worrying and talking about being afraid to go to bed at dinner, then when she got home from school, then in the car on the way to school, then when she got up in the morning. Her fear began to consume our attention.
Sara was doing well at school. She loved music and art and had close friends. Then her 2nd-grade teacher started sending home notes saying Sara was being disruptive. She wasn’t waiting her turn to speak in class. She raised her hand but blurted out answers to questions anyway. She interrupted her classmates. The teacher not-so-helpfully suggested we tell Sara to stop, which we did but Sara did not. Discussions about Sara’s respectfulness and self-control added to our collective dinner table angst. Sara also began to complain of headaches and went to the school nurse frequently, so we got her eyes tested. Her new glasses helped her see the blackboard better but didn’t do much for the headaches. It didn’t occur to us that both Sara’s overzealous need to be recognized and her headaches were related to her fear of bedtime. We were clueless.
Looking back now, I can see that the seeds of some of our biggest mistakes were planted in these early days and with them what would become for Sara an insidious self-doubt. After weeks of near hysteria leading up to bedtime every night, our patience frayed. Sara didn’t seem to be making any progress toward “getting over it” and being comfortable again to sleep in her pretty bed with her menagerie of stuffed hippos. Her inability to articulate exactly why she was afraid frustrated Glenn, in particular, who became convinced she was just being difficult, and we needed to stop coddling her. In ignorance and frustration, we turned what should have remained abundant empathy and support into a disciplinary nightmare. Our concern and frustration became exasperation, which became dismissal of her fears and then anger and punishment.
Not surprisingly, Sara didn’t respond well to our growing intolerance. Anger-based discipline doesn’t change behavior any better at home than it does at school, particularly when it fails to address the underlying cause of the behavior. We reached a breaking point the night Glenn, an incredibly loving father who would do almost anything for his children and pretty much has, spanked Sara, who became so hysterical she threw up. We are not spankers. This was not us, and I knew we needed help. It is humbling but vital to acknowledge that even the most attentive and loving parents can do a terribly wrong thing, believing it is for the right reasons.
Wit’s end and worry time
Other than trying to keep Sara out of trouble and the nurse’s office, school had little to do with what we were going through. Many parents don’t think about school as a source for mental health supports unless the school offers help. I doubt most even think in terms of “mental health” until things get really bad. You expect your child to be just fine, and you believe you can help solve their problems on your own. So much of mental illness manifests as behavior that could be part of normal developmental changes or personality; it is hard to see the problem for what it is until you reach your wit’s end.
I turned to our pediatrician, my go-to resource on many issues because she knew my kids well, and I trusted her. For the many families who don’t have a regular pediatrician because they don’t have health insurance, the school offers this familiarity, accessibility, and continuity and is their primary resource for a range of problems. The effect of family resources cannot be overstated. We had them in abundance: financial stability, health insurance, a safe home and neighborhood, and a network of supportive friends and family. At the time, I was a stay-at-home mom with flexibility and a car. Both Glenn and I were empowered by our life experiences and levels of education to seek out and navigate the various health and education systems involved. The latter takes serious tenacity and confidence in your authority as a parent and bill payer to get the answers you need. Many families are not in this position, which makes genuine engagement by school staff critical. This doesn’t mean schools are responsible for all levels of care, but their role as an early access point and in coordinating services is irreplaceable.
Our pediatrician referred us to a child therapist who diagnosed Sara with separation anxiety. Glenn was skeptical of a mental health diagnosis so I took the lead. The therapist worked with Sara and me to identify triggers and gave us tools and strategies to slowly de-escalate the anxiety. This included addressing the fear of the fear itself, which is often a key factor that increases anxiety. Among these strategies was Worry Time. It does no good to tell someone with anxiety not to worry about something that makes them anxious even if you can see there is no real risk. They have to learn to understand the fear and contain it. Worry Time was a scheduled 30 minutes when Sara got home from school when she could talk about her bedtime fears. The topic was off-limits the rest of the day. The scheduled nature of Worry Time gave Sara a sense of control over her ability to talk through her fears rather than simply being subject to them. We also began to slowly decrease the length of time I sat with Sara at bedtime each night. This phased approach allowed Sara to experience success at being awake by herself in gradually increasing amounts of time so that she became less fearful of the experience. With practice, patience, and continued counseling, things began to settle down. I felt less lost, and Glenn acceded to the process since it seemed to be working, although he viewed it more as Sara getting her act together than learning strategies to deal with a mental health issue. Eventually, Sara’s anxiety receded into the background, and we enjoyed a number of years of normalcy in terms of stress and sleep.
Teetering on the brink
By 8th grade, we were convinced Sara was over what we had come to refer to as “the sleeping problem.” Even when she had a brief recurrence, engaging the old strategies to get her back on track was fairly easy. Then early in high school, the anxiety came roaring back, this time masked as adolescent moodiness and volatility. The change in Sara’s behavior was fairly dramatic, but, again, we initially took it to be a typical byproduct of adolescence. What parent of a teenager hasn’t looked at their spouse at least once and said, “Who body-snatched our kid?” We had no inkling that Sara’s separation anxiety might only be dormant and could morph into something even more powerful yet equally difficult to recognize as a parent.
Normally empathetic, thoughtful, and kind, Sara became negative and quick to anger or cry. She was hypersensitive to disagreements with others, interpreting them as a threat to her well-being. Trying to problem solve with her was nearly impossible because she couldn’t see beyond her emotions to what steps might help change a situation. The word melodrama came to mind often. Sara continued to do well in school but separated from most of her middle school friends. She had danced seriously in a competitive program for years, which she quit without warning or discernible reason. At home, Sara and I fought, not constantly but enough to become a real facet of family life . Any serious or extended illness becomes a family affair to some extent, adding to the mix of already complex family dynamics. To be fair, Sara was often just lovely even during this period, and it was her siblings who passed around the role of raising our blood pressure like strep throat.
I’d gone back to work by this point for the National Association of School Psychologists and was learning enough about mental health to have a sense something wasn’t right, but I still thought this was more difficult-teen-and-struggling-parent stuff than anxiety. Sara wasn’t acting afraid. It wasn’t until she came to me in tears one day, saying she didn’t know what was wrong but she couldn’t take it anymore that I realized, once again, we needed help. Like so many other things, I didn’t understand at the time the importance of Sara’s self-advocacy. Her self-advocacy has been one of her greatest internal assets for coping and, quite frankly, in carving out a place of legitimacy in a world that often treats mental illness more like a character flaw than a health problem. Kids who lack this help-seeking instinct and a trusted person to whom they can reach out are at much higher risk for negative outcomes. Educators can help fill this void by engaging in meaningful conversations with students about mental health and fostering a sense of community and connectedness where they feel there is at least one adult who cares about them and who they can trust.
The labyrinth got darker and more twisted before it got better. We found an adolescent psychologist who diagnosed Sara with depression. Anxiety and depression are closely related and can mimic each other, particularly in adolescence. Despite therapy, Sara’s moods got more volatile, and she started having what we later learned were panic attacks. A psychiatrist prescribed medication — one of the drugs that, unbeknownst to us, had recently been associated with increased risk of suicide in children and teens.
I was in Dallas for a NASP conference when the high school counselor called to tell me that Sara’s friends had come to her concerned Sara was going to hurt herself. Her friends had done so because they had recently participated in a school program on depression and suicide awareness. The counselor had talked to Sara and concurred. I’ll never forget standing in the hotel lobby surrounded by hundreds of school psychologists, confronting one of the scariest possibilities of mental illness, feeling totally alone and overwhelmed. It can be easy to fall into your own dark space and lose sight of the path out.
A wise school psychologist once noted, “A parent can only be as happy as their most miserable child.” Indeed, parents can be significantly affected by their children’s mental health problems and often need support themselves. You would do anything to take your child’s pain from them, including absorbing it yourself. I frequently teetered on the brink of Sara’s suffering, dealing with my own stress and anxiety while trying to balance work and the rest of the family’s needs. This can be very isolating, particularly for families afraid of stigma. At a time when you need understanding from others the most, the first instinct can be to erect barriers. Many parents won’t volunteer information about their child’s illness, let alone their own stress. They may not tell the math teacher that mastering Algebra is not nearly as great a concern as whether this class will be the weight that tips their child into a downward spiral. Luckily, I learned to be open with friends and family and had a supportive work environment. And I had access to the expertise of my school psychologist colleagues who kept me sane and helped give perspective to the issues. This expertise is equally valuable in the school setting.
We switched medications and doctors a few times before getting the correct diagnosis of anxiety and panic disorder and the proper course of treatment. We learned that while some anxiety keeps us motivated and safe, the disorder causes the part of the brain that controls stress and anxiety to stay, in essence, stuck in high speed. The person is constantly in or on the verge of flight or fight mode. With ongoing therapy and medication, Sara learned to better manage her symptoms and respond more effectively when high stress triggered panic attacks. I remained a central support, particularly as she began to face an additional challenge when her lifelong headaches blossomed into full-blown migraines. There is a strong comorbidity between chronic migraines and anxiety disorders and, while the exact link is not known, experts believe that changes in serotonin levels are involved in both. This physical side to complex brain function (or dysfunction) has proven most difficult for Sara to deal with because migraines can be seriously debilitating. They got so bad one semester in graduate school that she lost 20 pounds and needed, for the first time in her schooling, an extension on some of her coursework. Throughout it all, Sara proved amazingly resilient and determined not to let her anxiety cripple her. She navigated stressful transitions between high school, college, graduate school, and work. She slogged through periods of isolation when friends couldn’t understand what she was going through. And she’s withstood the lingering undercurrent in many quarters that somehow implied that her anxiety was less illness than personal weakness.
Stigma and skepticism
Stigma is one of the greatest impediments to effective mental health treatment. It represses help seeking, creates isolation, and perpetuates the connotations of failure, blame, and shame. Most people disavow stigma as clearly harmful yet many of us perpetuate it unintentionally, often through skepticism. We give skepticism credence because it implies intelligence, relying on evidence, debunking myths, being logical, and more likely to be right. But skepticism is often just a way to reject something we don’t believe in or understand. It is incredibly harmful for people with mental health problems because it undermines not just their help-seeking behaviors but also their beliefs and views about themselves. Our own experiences can help drive such skepticism. We’ve all been anxious or depressed at some point. We handled it, powered through it, and got over it, all outcomes associated with self-control and competence. When we view someone else’s challenges through our own filter, even in an effort to be empathic, we can project our self-perceived successes onto them as failure. This “I did it; why can’t you?” message can fuel self-stigmatism that further undermines the ability to cope. It can invalidate an integral, if painful, part of the person, forcing her to prove over and over that her struggles are a real illness not a lack of willpower. This often suppresses help seeking and increases unhealthy coping strategies.
Occasionally, I found myself making things worse for Sara by telling her how to fix the problem instead of just listening. I thought I was being helpful with my logical suggestions, but I was really just telling her to think like me. I mistook her accounts as a request for advice rather than seeing them for what they were: an effort to share, articulate, and process her struggles with someone who loves and believes in her. I only added to her frustration and sense that “no one really gets it.” Glenn remained skeptical of the entire mental health process, partly because of his personal frame of reference as a highly competent problem solver and partly out of a desperate desire for Sara to simply get well. This ranged from questioning whether Sara was trying hard enough to doubting the competency of her doctors. After years of therapy and thousands of dollars, she should be cured if they knew what they were doing, right? The misdiagnosis in high school, false starts with her medication, and growing public debate about pathologizing and overmedicating normal but difficult feelings and behaviors all lent credence to his perspective. At times, this doubt became a point of contention between Glenn and me and was a major narrative for Sara, who came to “hate her stupid brain.” Luckily our mistakes never overcame our absolute commitment to support Sara in whatever way necessary. It is a lesson, though, that whether as parents or educators, how we think and talk about mental health requires a conscious awareness of our own biases, can cause conflicting perspectives among caregivers, and can seriously affect how kids perceive themselves and the help they receive.
Living life with an anxiety disorder takes guts, and parenting the person requires equal tenacity. The disorder and its consequences evolve over time and most educators only intersect for short stints on what is often a lifelong journey. Taking time to understand something of that journey improves every educator’s ability to be genuinely helpful. What has made me most proud of Sara has been her unwillingness to let anxiety prevent her from pursuing her professional and personal goals even though the journey can be rocky. Today, Sara is a 1st-grade teacher in a Title I school. She brings to her job the same eagerness and joy for people and learning with which she started life. She also has a clear-eyed understanding of what it means to struggle with a personal challenge, something from which her students — and her colleagues — can only benefit.
Author ID: KATHERINE C. COWAN (firstname.lastname@example.org) is director of communications for the National Association of School Psychologists, Bethesda, Md.