Making the decision to hospitalize my preteen for mental health treatment was undeniably the toughest choice I’ve ever faced.
During a recent call with my health insurance provider, I was met with an unfortunate reality. “If your child needs rehab for substance abuse, I can connect you with hundreds of options,” the representative said sympathetically. My heart sank as I shared my situation for what felt like the hundredth time, only to briefly feel a glimmer of hope when she mentioned, “In-network facilities are covered at 100%.” But that hope quickly faded as I waited for her system to process the information.
As she searched for children’s mental health residential facilities, I anxiously held my breath. After hours of scouring, I had compiled a list of reputable facilities, complete with a checklist of services and a pros and cons list to help guide my decision-making. But then the news came: “Let me look for children’s facilities in New Jersey… (pause) Oh wow! There aren’t any. Let me expand the search to 100 miles… Still nothing. I’ll check the national database… I’m truly sorry, but nothing came up.”
Yes, my insurance covers child psychiatric residential stays at full cost, yet there isn’t a single in-network facility across the nation. This begs the question: Why must we wait until mental illness escalates into something far worse before we take action?
Understanding Lily’s Struggles
My daughter, Lily, has faced challenges for as long as I can remember—emotional regulation, social skills, and communication difficulties have always been part of her life. In my quest for answers, I read countless articles, consulted various specialists, and tried everything from developmental pediatricians to psychiatrists, while experimenting with different medications. When she entered puberty, her struggles intensified, leading me to seek help from endocrinologists and specialists in pediatric menstruation. Unfortunately, I’m still looking for solutions.
Lily becomes highly agitated after just a few hours in one spot. “Restless” doesn’t quite capture the essence of her state; she paces, laughs oddly, and her mood shifts dramatically. Eventually, this culminates in her desperate need to escape her current environment.
In a school setting, this behavior presents serious safety concerns. The first time she was restrained is a memory that haunts me. That day, something inside me broke; I felt an overwhelming grief, and the pain was almost unbearable.
Sadly, Lily’s intense agitation became a daily occurrence. Her coping mechanism turned into seeking out physical restraint as a means to regain control over her body. In the community, she would often approach police officers who were familiar with her story due to repeated incidents. Even at her new therapeutic school, she tested the limits of safety for the same reason.
I am not just managing a typical preteen who needs discipline; I am caring for a child battling severe mental illness, requiring more specialized treatment than I can provide at home.
The Consequences of Agitation
For instance, not long ago, she started punching a concrete wall repeatedly. That night, I rushed her to the doctor only to find out she had broken her hand. Just weeks later, when the cast was finally removed, she returned to school and immediately began punching the wall again, necessitating restraints for her safety.
In a particularly challenging two-month span earlier this year, Lily was hospitalized via ambulance three times each week. Each visit followed a distressing routine; she would arrive with her limbs bound tightly because she had broken out of the softer restraints. It took several staff members to transfer her to a bed, and the doctors would administer a cocktail of sedatives. My twelve-year-old daughter, in such a heightened state, would not even flinch. Eventually, she required ketamine just to calm down, and even then, it often took a hefty dose to bring her to a state of rest. I would find myself awake those nights, staring at her chest rising and falling, acutely aware of the risks associated with the medications.
The Decision to Seek Help
I have countless stories of navigating through one crisis after another, all of which affected not just Lily but her twin brother and sister, who show no signs of mental illness. After much guidance from numerous professionals, I have made the hardest decision of my life: Lily will enter a residential facility to receive the help she desperately needs. For the past year, I kept telling myself I could manage everything at home, but I’ve come to realize it’s not about just “handling it.” It’s about prioritizing her well-being. One therapist posed a poignant question: “If your daughter had cancer, would you hesitate to seek treatment? This situation is equally serious.”
I am currently working with state services and a county case manager, but the process has been long and fraught with challenges. Initially, I reached out to my insurance company for assistance, believing my hard work would pay off in benefits. But it seems that’s not enough. If a family is in crisis, why must they endure months of delays and frustrating hurdles to receive assistance?
Now that I’ve accepted the necessity of navigating the state system, I’ve encountered even greater obstacles. Lily has been approved for an intensive care facility, but the waiting list stretches up to nine months. There are private options available, but the costs are staggering. I take it one day at a time, fighting through the challenges.
The Fight for Hope
As a teacher with two master’s degrees in education, I’ve spent years battling against closed doors. I fight for hope, which seems to slip further away each time I grasp it. My advocacy includes relentless phone calls, asking endless questions at meetings, conducting research, and seeking higher-ups to make sure Lily receives the care she needs. Most days feel like an uphill battle. If I, someone who works within the system for children, find it this challenging to secure help for my daughter, what about those who are less informed?
Many may struggle to comprehend why I would place my daughter in a residential facility for an extended period. Just six months ago, I wouldn’t have understood such a decision myself. However, I’ve grown to accept that this isn’t simply a matter of poor parenting or typical preteen rebellion. This is a child grappling with severe mental illness who requires care beyond what I can provide to ensure her safety and find effective treatment options.
I have tirelessly searched for guidance, roadmaps, and stories from those who faced similar struggles, only to find scant resources. Yet, as I’ve shared my experiences with others, I’ve discovered many who have faced similar battles. I believe sharing our story is crucial. It’s vital for those navigating similar challenges to know they are not alone. For those unfamiliar with mental illness, I hope to shed light on the reality of our mental health crisis.
While I lack professional expertise, I remain committed to searching for answers and fighting for my daughter. I believe that one day, we will reflect on these moments as reminders of our resilience and growth. For now, I invite you to join me in breaking the stigma that has long surrounded this topic. I am a parent of a child struggling with debilitating mental illness, yet the help she needs remains frustratingly out of reach.
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Conclusion
In summary, navigating mental health treatment for children can be an overwhelming and challenging journey. As parents, we often face difficult decisions regarding the care of our loved ones, particularly when traditional resources fall short. It’s vital to share our experiences and support one another in breaking the stigma surrounding mental health issues.